Summary Minutes – December 2–3, 2024

National Advisory Board on Medical Rehabilitation Research (NABMRR)
National Center for Medical Rehabilitation Research (NCMRR)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Virtual/In-Person Hybrid Meeting Format

Meeting Attendance

Board Members Present

Board Members Absent

Lewis A. Wheaton

Ex-Officio Members Present

Ex-Officio Members Absent

Day 1: December 2, 2024

Access the VideoCast recording of the first day of the December 2024 NABMRR meeting. Use the time stamps (in parentheses) in this report to navigate the recording.

NCMRR Deputy Director and NABMRR Executive Secretary Ralph Nitkin, Ph.D., opened the hybrid meeting at 10 a.m. ET.

Welcome, Introduction of New Members, and Approval of Minutes (00:50)

Barbara Bregman, Ph.D., PT, Chair, NABMRR

Board Chair Barbara S. Bregman, Ph.D., PT, welcomed participants and called the roll. The Board voted to approve the minutes of the May 6–7, 2024, meeting as written. Future meeting dates are the following:

• May 5–6, 2025
• December 1–2, 2025
• May 4–5, 2026

NICHD Director’s Report (09:50)

Diana Bianchi, M.D., Director, NICHD

In her report, Dr. Bianchi shared information about the upcoming presidential transition, NICHD engagement with external agencies, training efforts within NICHD, NIH research updates, and updates on the NICHD Strategic Plan 2025.

Presidential Transition (10:30)

The director of NIH and the director of the National Cancer Institute (NCI) are political appointments. During a presidential transition, all political appointees submit letters of resignation, which are accepted or rejected by the incoming president. As an example of this transition, former NIH Director Francis Collins, M.D., Ph.D., submitted his letter of resignation in 2017. Then-incoming President Trump rejected Dr. Collins’ letter, allowing Dr. Collins to stay in his position. Dr. Bianchi was unsure whether NIH Director Monica Bertagnolli, M.D., has submitted a letter of resignation. Incoming President Trump has already announced Jay Bhattacharya, M.D., Ph.D., as his selection for the next NIH director. Dr. Bhattacharya will need Senate confirmation to become the new director.

Regardless of who wins a presidential election, each Institute or Center (IC) is asked to provide briefing documents that provide information on topics thought to be of interest to presidential transition teams. NICHD has been asked to provide information on topics including intellectual and developmental disabilities (IDD), rehabilitation research, and maternal and infant health. Other IC Directors are currently merit-based appointments, which undergo formal review every five years. Dr. Bianchi said she has been reviewed once.

The government is operating under a continuing resolution until December 20, 2024, meaning that NICHD is operating on a flat budget based on the previous year. Dr. Bianchi had not received any updates at the time of the meeting.

External Engagement (13:36)

NICHD had a productive meeting with a delegation from Singapore in late summer 2024. The delegation was interested in artificial intelligence (AI) applications for pediatric research and rehabilitative research. Joe Bonner, Ph.D., served as a representative for NCMRR.

The Friends of NICHD organized a congressional visit to the NIH campus in fall 2024. To Dr. Bianchi’s knowledge, this was the first visit focused on NICHD research. Attendees came from seven congressional offices, from both the Senate and the House of Representatives. Theresa Cruz, Ph.D., served as a representative for NCMRR. The meeting included several presentations, intramural lab tours, and meetings with intramural and extramural research staff. Children who have been hospitalized for research protocols, along with their families, also spoke about their conditions and the NIH staff they worked with.

Congress has required a study on Strategies to Enhance Pediatric Health Research Funded by NIH from the National Academies of Science, Engineering, and Medicine (NASEM). NICHD is the study sponsor. As such, the study was included in NICHD’s 2024 fiscal year (FY) budget. The study committee will be examining the current NIH pediatric research portfolio and its structure, including the following:

• Methods and rationale involved in categorizing projects as pediatrics research using the Research, Condition, and Disease Categorization (RCDC) Process
• How pediatric components have been included or excluded from larger NIH initiatives
• Structural or process impediments to pediatric research applicants
• How pediatric research priorities are established within and across ICs
• How pediatric research activity is coordinated across NIH ICs
• How the NIH Clinical Center (CC) could best advance innovative pediatric research

At the time of this meeting, a draft committee roster was published for public comment until December 8, 2024. The committee’s first meeting was to be held December 5–6. There will be three to five more public meetings over the next few months, with the final report of recommendations due in January 2026.

Training (19:41)

NICHD’s Extramural Training and Career Development working group recommendations were as follows:

• Reinvigorate institutional training and career development programs
• Rethink how to talk about outcomes
• Create community among trainees
• Use training and career development programs to diversify NICHD’s reach
• Reinvigorate the loan repayment programs (LRPs)
• Use training programs to support strategic research priorities

In line with these recommendations, funding for NICHD’s LRP increased by 28% in FY 2024 compared to FY 2023. NICHD will also cluster new (Type 1) and renewal (Type 2) T32 applications separately for peer review, and Research Workforce Training has been added to the NICHD Strategic Plan 2025 as a cross-cutting theme. Outreach for training opportunities is also expanding. The Obstetric and Pediatric Pharmacology and Therapeutics Branch (OPPTB) workshop for the Clinical Pharmacology Training Network has been opened to all NICHD-funded trainees, and the NICHD Training Implementation Group has created new materials on extramural and intramural training opportunities for distribution at scientific conferences.

NIH Research Updates (24:30)

In situations of a public health challenge, mechanisms other than traditional grants can be used to support research. Challenges or prize competitions present an opportunity to directly engage public innovators to find ideas and solutions to important problems. Monetary and nonmonetary prizes (e.g., meetings with key officials or opportunities to speak at conferences) are awarded to participants. Other transactions involve nontraditional research partners or flexible terms, allowing researchers to adapt to quickly changing scientific requirements. These awards can be made more quickly than traditional grant funding.

NIH’s Implementing a Maternal health and PRegnancy Outcomes Vision for Everyone (IMPROVE) initiative has leveraged these mechanisms.

For example, as part of the IMPROVE initiative, NICHD sponsored the Connecting the Community for Maternal Health Challenge to build research infrastructure in communities. The first-place winner of this challenge was Nurturely, a community organization that provided culturally informed interventions to increase rates of lactation and decrease rates of depression in Black birthing parents. The Central Jersey Family Health Consortium won second place for developing an algorithm that uses Medicaid claims data to identify those at risk for maternal morbidity.

The Rapid Acceleration of Diagnostics (RADx) Tech for Maternal Health Challenge was issued to spur innovation in postpartum diagnostics and monitoring. The six grand prize winners developed technology to address cardiac function, blood pressure, postpartum hemorrhaging, anemia, and urinary tract infection (UTI) point-of-care diagnostics. Two runners-up developed technology for care management and blood pressure monitoring.

NICHD is also supporting researchers through the Researching COVID to Enhance Recovery (RECOVER) initiative, which is dedicated to understanding symptoms and morbidities associated with Long COVID. The initiative has supported “Characterizing Long COVID in Children and Adolescents,” by Rachel S. Gross et al., published in JAMA August 2024. The study shows symptoms by different age groups, which all differ significantly from symptoms in adults.

Dr. Bertagnolli’s signature program is Communities Advancing Research Equity for Health™ (CARE) for Health. The NIH Common Fund finances the program to integrate innovative research into routine clinical care in primary care settings. Listening sessions were conducted in summer 2024 with hospital systems, primary care providers and organizations, patient and community organizations, and federal agencies. The program has the following goals:

• Build sustainable and effective bidirectional partnerships
• Tailor approaches for community engagement
• Account for provider needs in research integration
• Develop financial sustainability
• Value patient and community contributions

The Common Fund allocated an initial $30 million to focus on rural communities. Initial awardees will participate in three ongoing NIH clinical trials:

• Evaluating a behavioral intervention for chronic, high-impact back pain to improve pain management and reduce reliance on prescription pain medication (Oregon Health and Sciences University [OHSU])
• Testing a collaborative treatment intervention to address opioid use and polysubstance use (OHSU and University of Wisconsin–Madison)
• Evaluating interventions for gout flares prevention and treatment (West Virginia University)

NICHD Strategic Plan 2025 Update (34:12)

The scientific themes of the NICHD Strategic Plan 2025 remain the same, but some objectives will be updated to reflect changes in science, public health focus, and general changing priorities. NICHD working groups have led the process of refreshing the strategic plan. They have considered updates, which have been presented to the leadership team for input. They have also provided a detailed review of the implementation plan. Each working group has received information on timelines of major programs and funding opportunities supporting the implementation plan, funding trends on research initiatives and activities, and information on cross-cutting theme representation. This process allows decisions to be informed by evidence. The strategic plan was informed by input from extramural researchers through listening sessions on draft objective concepts and a Request for Information (RFI) released September 2024. The NICHD Advisory Council also provided feedback about including AI in the strategic plan.

Appreciation (37:24)

Dr. Bianchi closed her report by thanking Kathleen M. Zackowski, Ph.D., for representing NICHD on the Brain Research Through Advancing Innovative Neurotechnologies^® (BRAIN) Initiative Multi-Council Working Group. She thanked the board members for their time.

Discussion (38:30)

Dr. Zackowski noted that foundations and nonprofits provide other important career choices outside of academia. Dr. Bianchi agreed, saying one can pursue multiple opportunities after earning a degree.

Michelle J. Johnson, Ph.D., asked what could be done to prevent decisions about funding from becoming a zero-sum game so that there is minimal sacrifice when determining the budget. Dr. Bianchi said there is a zero-sum game to some extent. Deciding what merits the most investment of funds is the hardest part of the leadership team’s jobs. That said, certain percentages of NICHD’s budget are fixed, including for NCMRR, for training and career development and for the intramural program. Everything remaining is subject to interpretation. In the past five to eight years, NICHD has stopped funding grants based exclusively on a priority score. Instead, there is a zone of consideration for which proposed research aligns with the strategic plan. This consideration helps NICHD manage a fixed budget. Dr. Cruz said that NICHD can also spread money among more principal investigators (PIs).

Tiffany A. Yu advocated for mental and emotional support for children participating in clinical trials and for their families. She asked whether children in these clinical trials are tracked to see how research has affected their outcomes as adults. Dr. Bianchi could not speak to extramural grants, but the transition to adult health was identified in NICHD’s first strategic plan. Adolescent research has also been added to one of the themes. NICHD has also held a workshop on the transition from being a pediatric patient to being an adult patient. Dr. Bianchi said two childhood health specialists have been added to the CC staff. These specialists are paying particular attention to the mental health and overall well-being of children who are hospitalized. Finally, families can stay at The Children’s Inn for free while their children are in a clinical study, and there are activities to engage and educate children during their stay.

Ms. Yu recognized that NICHD may not do much advocacy, but she said that forced sterilization for disabled people is still legal in more than 30 states. Dr. Bianchi said NICHD’s purpose is not advocacy but to generate evidence that informs policymakers. The institute is focused on reproductive health and ways to provide evidence about how changes over the past few years are affecting infant and maternal mortality. That is how NICHD is part of the reproductive justice ecosystem.

Oluwaferanmi O. Okanlami, M.D., said that support for faculty in academia is often within a rigid framework of what can be funded. Although there are opportunities outside of academia, there also need to be more opportunities for people within it. Faculty focusing on community research, for example, have not always been supported. Dr. Bianchi said that this was an excellent point. Over the past eight years, she has seen increased recognition of both community research and implementation research. She has also seen trends of increased funding for these areas of research.

Jose Luis Contreras-Vidal, Ph.D., seconded Ms. Yu’s point on supporting parents. He said he wanted to see interventions for children and parents in parallel. He also said the strategic plan should include harnessing technology, including wearables and brain–computer interfaces (BCIs), to maximize efforts while encouraging collaboration. Dr. Bianchi said Dr. Contreras-Vidal had a broad overview of how the NABMRR intersects with the strategic plan as a member of the NICHD AC. She thanked Dr. Contreras-Vidal for his time and service.

Steven C. Cramer, M.D., FAAN, FAHA, said he was happy to see funding for the NICHD LRP, noting that it made a significant difference in his own career. On outcomes, he said humans deserve to be characterized by more than a single digit. Drawing on his experience as a stroke neurologist, he said outcomes needed to improve. Dr. Bianchi said that she presented challenges, especially the RADx Tech for Maternal Health Challenge, for their relevance and parallels to monitoring someone recovering from stroke. There is an alarming rate of postpartum strokes in young women.

Dr. Nitkin said that NICHD is working to contextualize academic research for people and their families by including people with lived experience in the research enterprise and pushing researchers to think beyond their own siloed training. He said that NICHD is a meritocracy that uses peer review and specialized initiatives to identify blind spots in research. Dr. Bianchi said that patients and families are on the AC and attend the annual Intramural Research Symposium. She provided an example of an 11-year-old girl and her family sharing their story. These voices are inspirational and ground everyone at the institute.

Dr. Okanlami highlighted the importance of making sure disability accommodations are provided throughout the lifespan. As rehabilitation research improves, there will be more people with disability accommodation needs. Referring to Dr. Bianchi’s example of the 11-year-old girl, Dr. Okanlami said that the girl will need equitable access to ensure her continued success. Dr. Bianchi said that this point was well taken. Dr. Nitkin highlighted Dr. Okanlami’s work at the University of Michigan, which provided student accommodations and connected students to resources. He praised Dr. Okanlami as a community activist within his institution.

NCMRR Director’s Report (1:02:00)

Theresa H. Cruz, Ph.D., Director, NCMRR

In her report, Dr. Cruz presented NCMRR staff updates, activities, collaborations, updates from the May board meeting, and the latest science advances.

NCMRR Staff Updates (1:03:07)

Chris Hughes, Ph.D., joined as a new program analyst. Dr. Hughes has a doctorate in bioengineering from the University of Pittsburgh and completed postdoctoral work in animal electrophysiology. Alicia Ross, M.P.A., is another program analyst who has helped to onboard new members. Dr. Cruz also thanked Daniel Safriet, a summer student from Howard Community College.

Activities and Collaborations (1:04:11)

Ten awards were issued in September 2024 for the R01 Research Funding Announcement (RFA) Understanding and Mitigating Health Disparities Experienced by People with Disabilities Caused by Ableism (R01 Clinical Trial Optional). Financial contributions of almost $30 million came from NICHD, NCMRR, the National Eye Institute (NEI), and the Office of Behavioral and Social Sciences Research (OBSSR). Topics to be studied include the following:

• Diagnostic overshadowing; measuring and dismantling ableism
• The impact of anti-discrimination laws on organ transplants
• Pregnancy and childbirth outcomes for people with disabilities
• Barriers to the health care system faced by people with IDD, mobility disabilities, or blindness or low vision
• Identifying and overcoming ableist beliefs and practices among caregivers, educators, and health care providers caring for children who are blind or visually impaired

Applications included a special attachment to include those with lived experience, and Dr. Cruz worked with peer reviewers to make sure there were people with lived experience at the review. Dr. Cruz met with the PIs on November 29, 2024, and will continue to provide updates on these projects. There is a STAT news article available for those who are interested in learning more.

The Community Champions for Disability Health Challenge from NIH and the Administration for Community Living (ACL) was established to build trust and community engagement to reduce health disparities. Financial contributions came from ICs across NIH, including NEI, the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the Office of the Director (OD), and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The challenge was open to nonacademic 501(c)(3) organizations from August 29 to November 1, 2024. There will be $485,000 in prizes issued over two phases. The first eight Phase 1 winners will be featured at the 2025 NIH Rehabilitation Research Conference on March 10–11, 2025. Registration for the conference is now open. The conference will also be videocast for people who cannot attend in person.

The Disability Research Coordinating Committee (DRCC) was commissioned by Tara A. Schwetz, Ph.D., Director of the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI). DPCPSI houses the Common Fund and the Offices of NIH. Their advisory council is the Council of Councils. DRCC is chaired by a member of DPCPSI, by Dr. Cruz, and by a member of the National Institute on Minority Health and Health Disparities (NIMHD). The committee is working on a strategic plan for disability research at NIH, which Dr. Schwetz will present during this meeting.

NCMRR provided funding for the Design by Biomedical Undergraduate Teams (DEBUT) challenge, led by the National Institute of Biomedical Imaging and Bioengineering (NIBIB). This year’s award went to a team of students at the University of Utah for their work on a low-cost, powered prosthetic limb. The award was announced in an NIH press release.

NCMRR performed outreach at the following conferences:

• Society for Neuroscience
• American Congress of Rehabilitation Medicine (ACRM)
• American Occupational Therapy Foundation (AOTF) Engage Summit
• Medtech Conference
• Biomedical Engineering Society
• American Society of Biomechanics
• American Academy for Cerebral Palsy and Developmental Medicine (virtual)
• Occupational Therapy Summit (virtual)
• Including new attendance at these conferences:
  • Annual Biomedical Research Conference for Minoritized Scientists
  • National Association of Rehabilitation Research and Training Centers
  • Orthopedic Research Society

Dr. Cruz and NICHD Deputy Director Alison Cernich, Ph.D., were also invited to speak on the NIH Office of Extramural Research (OER) All About Grants podcast. Dr. Cruz thanked David Kosub, Ph.D., who runs the podcast.

Updates From the May Board Meeting (1:17:18)

Updates on Medical Rehabilitation Research Resource (P50 Clinical Trial Optional) have been delayed to the May council meeting.

The Limb Loss and Preservation Registry is a collaboration with the Department of Defense (DoD). Mayo Clinic was contracted to set up an electronic health record (EHR)-based, high-quality registry. The registry is now an independent entity run by the Thought Leadership & Innovation Foundation in collaboration with the Amputee Coalition. The registry has approximately 225 locations enrolled, including hospitals and orthotic and prosthetic clinics, and data from more than 500,000 patients from 12 million visits.

NCMRR was represented at the following NIH-supported conferences:

• OBSSR Future of Scientific Conferencing Workshop, June 2024
  • Topics included cultivating belonging and inclusion, sustainability, innovative formats, networking, and technologies.
  • Dr. Cruz can provide a recording of the meeting for those interested.
• NIH–U.S. Food and Drug Administration (FDA) Joint Workshop: Developing Implanted BCI Clinical Outcome Assessments to Demonstrate Benefit, September 2024
• NIH Diversity Supplement Professional Development and Networking Workshop, September 2024
  • Chaired by Toyin Ajisafe, Ph.D.

NCMRR worked with the Agency for Healthcare Research and Quality (AHRQ) on their systematic review, Healthcare Delivery of Clinical Preventive Services for People with Disabilities. The review was highlighted in the October 3, 2024, AHRQ Director’s Blog post. NCMRR also worked with the Office of Science and Technology Policy (OSTP) on disability data equity and improving digital accessibility of scientific and technical publications.

Science Advances (1:24:58)

The NIH Director’s Blog highlighted PI Richard Andersen, Ph.D., for “Representation of internal speech by single neurons in human supramarginal gyrus” (PMID: 38740984). This work was supported by the BRAIN initiative.

Diann Gaalema, Ph.D., funded by the National Heart, Lung, and Blood Institute (NHLBI) published “Improving cardiac rehabilitation adherence in patients with lower socioeconomic status: A randomized clinical trial” in July 2024 (PMID: 39037811). She and her lab examined whether financial incentives increased rehabilitation adherence.

NICHD funded a study by PI Hugh Herr, Ph.D., on agonist–antagonist myoneural interface surgery. The study led to development of a bionic limb that allows for faster walking, better balance, and the abilities to change speed, climb stairs, and step over obstacles (PMID: 38951635).

Dr. Cruz closed her report with an invitation to join the NIH Rehabilitation Research Listserv.

Discussion (1:29:34)

On community partnerships, Ms. Yu raised concerns about ensuring representation from Black, Indigenous, and People of Color (BIPOC)-led organizations. Dr. Cruz said that NCMRR works closely with parts of NIH that represent groups with health disparities. Equitable representation is always top of mind.

Ms. Yu asked whether community partnerships are carried out with due diligence regarding their labor practices. Well-funded disability organizations can pay workers with disabilities subminimum wages under Section 14(c) of the Fair Labor Standards Act. Dr. Cruz said that the focus of the community challenge was on health disparities. The awards have not yet been issued, but this concern will be considered alongside other rules for awarding challenge funds.

Ms. Yu asked whether publications could be provided in plain language. Dr. Cruz said that DRCC is drafting an RFI that will have a separate version in plain language. The committee hopes that this will ensure wider participation, and not just from academics.
Francisco Valero-Cuevas, Ph.D., said that outcomes often rely on deployment of a product or service. Even if there are improved outcome measures, clinical implementation can take an average of 17 years. He agreed with developing better outcome measures but also encouraged considering how to accelerate deployment. Dr. Cruz said that partnerships with the FDA and the Centers for Medicare & Medicaid Services (CMS) could help accelerate deployment. She gave as an example the recent ACRM meeting, at which FDA attendees provided information on registering a new biomarker. Dr. Cramer noted that the FDA can also slow down this process, citing the lack of new endpoints approved in the field of stroke.

Dr. Cramer praised the science advances, although he jokingly said that he worried about Dr. Andersen’s study on the internal voice. He said that he thought Dr. Gaalema’s study on incentives could be very important for changing behavior. Dr. Cruz said that accessing the internal voice can be helpful in restoring speech to those who have lost it, but agreed that ethical considerations also exist. On Dr. Gaalema’s study, Dr. Nitkin said the psychology that incentivizes behavior is underappreciated in the academic world and opens up new possibilities, especially for the rehabilitation population.

Dr. Okanlami recommended two conferences for future NCMRR attendance: the annual Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) conference and the Abilities Expo. The expo could allow for more direct interface with communities.

Dr. Contreras-Vidal said that challenges can favor established institutions that are set up to meet them. He encouraged efforts to set up teams at universities that may not be well-represented. Dr. Cruz said that she will bring this feedback to NIBIB.

Dr. Zackowski asked whether there are incentives for prevention, which could be especially helpful when working with young children by establishing behaviors that they can continue as they age. Dr. Cruz said that collaborations with OBSSR could help address those questions.

Dr. Nitkin said that this is an underappreciated area of research with many challenges. Families and communities can be supports or barriers to changing behavior. There are also racial, cultural, and ethical issues to consider.

Dr. Zackowski recommended the American Society of Neurorehabilitation’s annual meeting for future conferences.

Sarah Blanton, D.P.T., PT, FNAP, praised the RFAs on ableism and sharing outcomes with participants in research studies. She asked whether there was a way to better include research participants in the publishing process. She gave her work with the Journal of Humanities in Rehabilitation as an example. Staff co-create content with people from disability communities, and editorial staff in disability communities are encouraged to shape the vision of the journal. Dr. Blanton asked whether these approaches could be applied to clinical trials and other aspects of community engagement. Dr. Nitkin praised her leadership on the journal. Dr. Cruz said that there are no plans to reissue the ableism RFA at this time. That said, NCMRR funds many projects through parent announcements, and staff can always help find announcements matching an application. Dr. Cruz appreciated the journal’s co-creation and said that academics often forget the assets a community can bring.

Angel Hardy Heinz said that expanding conference attendance could help change behavior and reach more audiences. She asked whether NCMRR planned for the Community Champions for Disability Health Challenge to continue. Dr. Cruz said that NCMRR learned a lot from running this challenge. The challenge was planned as a two-year project, but NCMRR intends to stay in touch with the teams to learn what they are doing and what community feedback they are getting. There are no other challenge plans at this time, but Dr. Cruz is excited to use them in the future to address other research needs that cannot be addressed by traditional funding mechanisms.

Linda Ehrlich-Jones, Ph.D., said that when trying to get people to change, people’s internal and external motivations need to be considered.

NABMRR Liaison to the NICHD Advisory Council (1:54:49)

Dr. Contreras-Vidal shared his experiences as NABMRR liaison to the NICHD AC. The council meets for two days, one in an open session and one in a closed session. Different IC directors attend to report on activities and hear about work at NICHD, which is valuable for establishing collaborations. Concept review and clearance is an interesting process that, as Dr. Bianchi said, includes influential voices from participants.

Dr. Contreras-Vidal has included the participant voice in his own research, including involving participants as co-authors on publications. As a mentor, Dr. Contreras-Vidal also brings the participant voice to his students. Students get to talk to participants and conduct research at the same time. Dr. Contreras-Vidal has high school students at the Building Reliable Advances and Innovation in Neurotechnology Center. This early experience is crucial for understanding regulatory processes for medical devices. Dr. Contreras-Vidal also takes time to share his career story with his students. His experiences in high school were foundational to his career in research. He hopes to continue providing opportunities for students. These experiences can shape their futures, and students can feel their impact on society.

In his service on the council, Dr. Contreras-Vidal tries to facilitate work across ICs. He hopes collaboration can expand to an international scale. Collaboration, combined with giving more participants greater agency, is crucial for advancing research, including his own work combining BCIs, music, and dance. Dr. Contreras-Vidal encouraged the board members to attend a future meeting to learn about the council’s priorities.

Dr. Nitkin said that the NICHD AC has many procedural elements, and funding decisions can make sitting on the council stressful. However, the participant voice helps bring home the ways in which NICHD researchers are changing lives. Dr. Contreras-Vidal was selected for the council because of the humanity he expresses in his role. Dr. Nitkin encouraged board members to reach out with questions about the council.

Affordable Neurorehabilitation: Assessing and Treating Motor and Cognitive Function After Nontraumatic Brain Injury (2:09:00)

Dr. Johnson disclosed that there are patents filed on TheraDrive and the Rehabilitation Using Community-Based Affordable Robot Exercise Systems (Rehab CARES) robot system. She also has equity in a spin-off company of University of Pennsylvania called Recupero Robotics LLC.

Dr. Johnson studies the incidence of nontraumatic brain injury (i.e., brain injury from communicable and noncommunicable diseases from childhood or maternal medical conditions) in low- and middle-income countries. As the population ages, the challenges of caring for people with disabilities will grow; these challenges will be exacerbated because of shortages of clinicians and rehabilitation care experts. To address these emerging gaps in care, Dr. Johnson is developing assistive robots and mechatronic systems. Therapy robots can provide remediation, assess levels of disability and impairment, and deliver autonomous or semi-autonomous therapy. Assistive robots or mechatronic systems can provide supportive functions and activities by observing, monitoring, demonstrating, and eliciting behaviors. These technologies can supplement the work of clinicians as part of the therapeutic process. Dr. Johnson provided several examples of assistive technology, including a robot attached to an impaired arm to improve daily function and the Baxter robot, which has been used for elder exercise, monitoring, and intervention.

Research on these technologies has grown, but access has been limited both internationally and within the United States. Dr. Johnson illustrated this issue by comparing her experiences in the United States with those of her relatives living in Jamaica. A book edited by Dr. Johnson and her colleagues further showed these disparities: Research indicated that 23% of assistive technology companies were based in North America, 35% in Europe, 25% in Asia, and very low percentages in Africa and South America.

The mechanical complexity, size, and cost of assistive technology prohibit ease of use in low-income countries. Cost is especially challenging, despite the potential for robots to provide support in places where there are shortages of clinicians (PMID: 32695058).

Therefore, Dr. Johnson and her colleagues are trying to develop lower-cost rehabilitation robot systems. Potential strategies to improve access include the following:

• Using a system of low-cost robot units that are modular and can be reconfigured
• Using cheaper materials (e.g., 3D-printing, soft robots, found objects)
• Developing open-source devices and sharing knowledge for building community
• Leveraging simulation-to-real techniques
• Using local manufacturing and resources

Dr. Johnson’s team developed the TheraDyad system to train those with cognitive impairments through haptic connection. The system uses two revised TheraDrive robots equipped with monitors. Participants are separated, but the actions of one participant affect the other as both try to track an object on their monitor. Participants included six older adults and three stroke survivors. Dr. Johnson found that participants’ motor learning improved if they were paired with someone better at the task, while participants paired with someone worse showed reduced motor learning. An F31 fellowship from NICHD is helping to continue this work.

Dr. Johnson received a Small Business Technology Transfer (STTR) grant with Recupero Robotics LLC to develop a system that could be used in a low-resource setting. She is collecting data in a community-based rehabilitation center by using a setup scenario similar to what was used in Mexico. Dr. Johnson hopes to develop a commercial version of the setup in the future.

Dr. Johnson is also studying rehabilitation in populations with HIV. A colleague in Botswana found that many stroke survivors have HIV. Little is known about the connection between HIV and stroke, but early work in South Africa suggested that outcomes for these patients were slowed. A Ph.D. student from Dr. Johnson’s lab then went to Botswana to study cognitive impairments and mapped them to HIV-related cognitive or motor impairments.

Lastly, Dr. Johnson is working with the Children’s Hospital of Philadelphia to develop automated assessments and early detection technology for children with cerebral palsy (CP), using data collected from infants. Early detection of CP and substantial training is crucial to maximize brain plasticity, but this training is not always accessible in low- and middle-income countries. Assessments are currently done at 3 to 4 months of age, but CP is often not diagnosed until 2 to 3 years of age. Dr. Johnson is interested in using AI in smart toys to identify metrics that could distinguish infants at risk of CP. A recent study had babies play either alone or with the smart toy. Machine learning (ML) paradigms were then used to develop a gross motor assessment that could extract kinematics and build an algorithm to predict assessment scores. The paradigm has been able to identify typically developing babies relatively accurately. Dr. Johnson is currently evaluating video sessions to determine whether ML can improve CP predictions. She is also trying to develop better toys with sensors that could allow the toys to predict interactions.

In summary, Dr. Johnson’s work illustrates that affordable neurorehabilitation is possible with novel technologies and strategies. She has gained insight into how motor and cognitive impairments influence performance of recovery tasks after stroke, in populations with HIV, and in stroke-HIV populations. She has also gained insight into using video and smart toy systems to improve prediction of CP. Dr. Johnson is interested in the future use of affordable smart toys to evaluate milestone acquisition in infants.

Discussion (3:01:07)

Dr. Contreras-Vidal asked whether there was any interest in using electroencephalography (EEG). Dr. Johnson said that she is using EEG. She started with affordable robots because of her interest in therapy systems.

Dr. Valero-Cuevas praised these studies for their breadth and depth. He asked for Dr. Johnson’s views on remote therapeutic monitoring and whether they can serve as an opening to deploying at-home technology. Dr. Johnson said that she is currently working with at-home teleremote systems and thinking of how both robots and at-home systems could be used in homes and communities. These technologies could be a major luxury in someone’s home, but they could also be used in primary care settings and clinics.

Robert L. Sainburg, Ph.D., asked whether robots have a therapist interface, noting that therapists are often resistant to robots because robots can take away the ability to manage and grade movements in the way therapists want. Dr. Johnson said that therapists can modify the robots and take control of them. She has also found that attitudes toward robots can depend on the setting. Therapists in Botswana do not have these concerns, likely because few therapists work there.

Dr. Zackowski asked whether Dr. Johnson has spoken to families about their thoughts on these technologies. Dr. Johnson said that she had surveyed people from urban and rural areas of Botswana as well as different age groups. She found greater acceptance of technology in urban areas and younger populations. In the United States, older people are more interested. Dr. Johnson has also seen people who are interested but do not feel comfortable using the technology on their own. Her research team has seen acceptance in Botswana, but they are still working at building confidence.

NIH Disability Research Coordinating Committee (3:10:03)

Adam Politis, Health Scientist Administrator, Office of Behavioral and Social Sciences Research
Tara Schwetz, Ph.D., Director, Program Coordination, Planning, and Strategic Initiatives, NIH

Dr. Schwetz provided background on NIH’s work in advancing disability research. In 2022, the NIH Advisory Committee to the Director (ACD) Working Group on Diversity had a subgroup on disability that provided recommendations on how NIH could further disability research and inclusion. These recommendations led to the development of an internal subcommittee to coordinate responses. The success of these efforts and others presented during this meeting can be seen in NIMHD’s designation of people with disabilities as a group experiencing health disparities. Continuing this work requires a well-coordinated approach across all of NIH and input from all of the community. DRCC has pulled together disability researchers, policy experts, and people with lived experiences to develop an agency-wide strategic plan on disability research.

Mr. Politis provided additional details. The committee was formed in summer 2024 and finished its initial activities in September 2024. The committee’s charge is to provide an NIH-wide forum for discussing health issues facing disability communities and to serve as a catalyst for developing research, research training, and career development initiatives focused on people with disabilities. Its responsibilities include the following: developing, implementing, and evaluating the NIH Strategic Plan for Disability Research; facilitating and coordinating activities related to disability research across NIH ICs and other federal agencies; and developing new research and training activities for NIH leadership to consider.

The committee is co-chaired by Dr. Cruz, Mr. Politis, and NIMHD’s Larissa Avilés-Santa, M.D. Cheryl Jacobs, Ph.D., from OD and the Office of Science Policy, serves as the executive secretary. The committee currently has 69 members who come from 24 ICs and 18 offices across NIH. It also includes individuals with lived experience.

The timeline for strategic plan development is as follows:

• September 2024: NIH DRCC was established.
• October–November 2024: The draft strategic plan framework was established, and DRCC hosted community roundtable discussions for input.
• December 2024: DRCC will host a town hall and release an RFI on the draft.
• January–May 2025: DRCC will hold additional community engagement activities and analyze the responses to the RFI, and draft the strategic plan.
• Summer 2025: DRCC will release the final strategic plan.

Community engagement events have been used to build trust, support, and open dialogue between disability communities and NIH; identify and understand disability communities’ unique needs and research concerns; raise awareness of and promote community participation in the strategic planning process; and obtain input from a wide range of individuals and organizations to use in the development of the strategic plan framework. The roundtable discussions engaged with researchers, clinicians, members of professional associations, people with lived experience, and members of advocacy organizations.

Discussion questions included the following:

• What are the primary scientific opportunities and challenges in disability research that should be addressed by NIH? How can the NIH mission statement most accurately reflect NIH’s disability research priorities?
• How can NIH encourage new investigators to enter the field of disability research, support existing researchers, and promote disability inclusion in the scientific workforce?
• How can NIH improve the inclusion of individuals with disabilities in research and clinical trials, including the development of research topics, and foster collaboration with advocacy groups and professional associations?

Written summaries from these events are available on the committee’s research events webpage. Upcoming activities from the time of this meeting include the NIH Town Hall on Disability Research on December 3, 2024, and the Draft Strategic Plan RFI on December 12, 2024. The RFI will be seeking feedback on the draft framework’s cross-cutting themes, strategic goals and potential opportunities, indicators to measure progress on strategic goals. The RFI will also seek feedback on how NIH can share its strategic plan and communicate its progress, success, and impact. Finally, there will be an ACD meeting on December 12 and a Council of Councils Disability Research Working Group meeting with the date to be determined.

Discussion (3:25:08)

Ms. Hardy Heinz asked for additional details on the Council of Councils. Dr. Schwetz explained that the Council of Councils serves as an advisory council to DPCPSI and more broadly to the NIH director. The council has representatives who bring together a broad spectrum of individuals and backgrounds across NIH. Each IC nominates members for the Council of Councils, many of whom have been on councils at other ICs.

Dr. Johnson asked whether the definition of disability considers people who acquired disability because of a stroke or disease. Mr. Politis said DRCC uses the Americans with Disabilities Act (ADA) definition of disability, which includes those two groups. DRCC tried to approach the definition broadly to address groups traditionally defined as having a disability and groups identified as being affected by health disparities.

Responding to a picture of someone playing tennis in a wheelchair, Dr. Okanlami pointed out the need for diverse representation among the disability community. Dr. Cruz said that DRCC has received eye-opening input that has helped members learn about how different disability populations view messages and images. Dr. Okanlami said that he is also a huge advocate for parasports, both as a means of therapy and as a continuing activity. He is on President Biden’s Council on Sports, Fitness, and Nutrition. Dr. Cruz highlighted several areas of NCMRR’s work in adaptive sports: NCMRR hosted a workshop (Can Physical Activity Improve the Health of Wheelchair Users?) with the Office of Disease Prevention and the National Institute of Neurological Disorders and Stroke (NINDS), has awarded several grants that are approximately two to three years into their funding, and is reviewing submissions about adaptive sports from the recent challenge.

Ms. Yu shared that the term rehabilitation often implies a temporary state; in her own experience, her health care team sees rehabilitation as only the first four months after an injury. However, she said that she will technically need rehabilitation for the rest of her life. She pointed out that there may need to be a broader way of thinking about rehabilitation.

Ms. Yu asked what the audience for the DRCC town hall will be. Mr. Politis said the event has been shared with more than 600 people, and NCMRR is seeking both academics and as many attendees from the public as possible. Because DRCC is trying to inspire culture change across NIH, as many people from disability communities as possible will be included.

Karl D. Cooper, J.D., voiced appreciation for the committee’s efforts. He had attended a roundtable discussion and noted that there were people who wanted more of a voice. He asked what else DRCC is doing to engage the entire community. Mr. Politis said that in addition to these discrete events, DRCC has an email address and sets up extra times for people to meet with the committee. DRCC is exploring having more regular events and different types of events that allow different groups to participate (e.g., having meetings that accommodate support staff or the use of communication devices). Mr. Politis also encouraged responding to the RFI. DRCC is trying to create an ecosystem for dialogue and coordinating functions. Dr. Schwetz added that this is just the beginning, and she encouraged people to provide feedback on what else can be done to engage the community.

Responding to Ms. Yu’s thoughts on rehabilitation, Dr. Cramer said that the word’s Latin origins mean “to make someone able again.” Dr. Cramer sees stroke as a chronic disease that is managed like diabetes or epilepsy, but he too is frustrated by the way stroke is often treated as a single event. He agreed that lifelong rehabilitation needs greater acceptance. Dr. Cruz pointed to changing definitions of traumatic brain injury (TBI) as signs of change. Dr. Zackowski said legislative change needs to support these new definitions, and this change comes from research showing that such legislation is necessary. She believes that changes in definitions, legislation, and research are all going in the right direction but need to be put together.

Dr. Okanlami said that there is an opportunity in this group to elucidate that not everyone is trying to be “fixed” or “cured.” There is nothing wrong with prevention, but discussions of prevention can make some communities feel like researchers are trying to eradicate them. Juxtaposing these two stances is a difficult conversation. While discussing cures and prevention, researchers also need to recognize that those who are too late for prevention want access, not a cure. Researchers also need to consider different community stakeholders in their conversations. Mr. Cooper added that the U.S. Census Bureau has discussed whether disability is an identity or an experience someone has. Those who resonate with disability as an identity will have a very different mindset from someone who is defined as having a disability by the ADA definition but does not personally identify as such. Dr. Nitkin said that these perspectives remind the group to be proactive about seeking appropriate chronic support. Mr. Politis said that DRCC members have raised these concerns as well. The concerns are another reason the committee is working to engage with a wide range of individuals.

Dr. Contreras-Vidal applied elements of this discussion to devices. Researchers working with devices also need to think about augmentation, which involves how devices are regulated. In discussions of how to view disability, there also need to be discussions of how devices are used and affect society.

Neuromechanical Foundations for Treating Upper-Extremity Function in Stroke: On the Other Hand… (3:46:00)

Robert Sainburg, Ph.D., OTR/L, Dorothy Foehr Huck and J. Lloyd Huck Distinguished Chair, Kinesiology and Neurology, Pennsylvania State University

Motor lateralization is the tendency for one side of body to feel and coordinate differently than the other side. Understanding motor lateralization can be very important after a stroke that impairs one side because of disruptions in blood supply. Humans were once thought to be the only animals capable of motor lateralization, but a 2009 study suggested that lateralization goes back to the advent of vertebrates 500 million years ago . Moreover, the study suggested that one side of the brain has adapted to deal with regular and predictable stimuli while the other side has adapted to respond to sudden changes in environment. Dr. Sainburg summarized these differences as one side adapting to be efficient and the other adapting to be robust. This suggestion contrasts with the idea of dominance, in which one side of the body is “good” and the other is not. Instead, the two hemispheres work differently, and each limb does the same action while relying on the contralateral hemisphere more than the other. The first evidence for dominant arm efficiency came from a study in Dr. Sainburg’s lab more than 20 years ago, which tracked arm movements during a simple task: reaching for objects in virtual reality (VR). Without visual feedback, the dominant and nondominant arms reached with the same speed and similar accuracies, but the nondominant arm showed a slightly larger curvature of movement.

In clinical translation, even small deficits in efficiency can greatly affect daily activities. Dr. Sainburg and colleagues studied the arm and hand movements of 120 stroke survivors, categorized by mild, moderate, or severe movement impairment, in a series of clinical and functional dexterity tests. They found that worse performance in the contralateral hand was correlated with worse performance in the ipsilateral hand, regardless of hemisphere damage. These findings suggested that ipsilateral control affected movement in both limbs and created a compounding issue in everyday function. Dr. Sainburg performed a subsequent study training the nonparetic arm in 13 stroke survivors with moderate-to-severe movement impairment. Analysis of self-reports showed improvement in function, and clinical tests showed moderate but nonsignificant improvements. A follow-up study showed improvements in the ipsilateral arm in some clinical tests and no changes in other measures. The improvements lasted at least six months. The control group was administered traditional training by occupational therapists and showed no changes.

In summary, these findings suggest that the ipsilateral arm may need training to overcome its movement impairments, even if someone has lost significant functionality in the contralateral arm. Dr. Sainburg recommended testing both arms and remediating both as needed. He is interested in applying these studies to ADL training to improve functional movement.

Discussion (4:20:15)

Dr. Cramer asked which ADLs are most affected by nonparetic hand deficits. Dr. Sainburg said that he has not looked quantitatively but has seen deficits in checker stacking, latent heavy object tests, and card turning. He did not see significant deficits in simulated feeding tests.

Dr. Zackowski asked whether this hypothesis would change with evolving deficits, such as in multiple sclerosis (MS). Dr. Sainburg posited that there would be additional changes in function, depending on where the lesion was located. For example, a left posterior parietal lesion may result in deficits with learning new motor skills. Dr. Sainburg said he is currently working with NINDS, using deep brain stimulation (DBS), to study these conditions.

Dr. Zackowski asked whether Dr. Sainburg controlled for changes in strength over time. Dr. Sainburg said the team measured strength in the first study and found that improvements people made were independent of overall strength. He interpreted this finding to mean that changes in performance came from overall coordination, and he did not measure strength in subsequent studies.

Dr. Johnson asked whether Dr. Sainburg would recommend manual bilateral training over unilateral training. Dr. Sainburg recommended evaluating both arms and training the ipsilateral arm if needed, ideally within a single medical center.

Dr. Johnson asked for further details on the studies in stroke patients. Dr. Sainburg worked with patients with severe paresis and some with additional severe cognitive impairment. Patients were allowed to choose the tasks to complete and were coached through them, as opposed to more traditional therapy. There were 120 participants in the first study and approximately 60 in the next. Dr. Sainburg separated patients by left and right hemisphere damage and tried to use activities that would engage the two hemispheres. For example, the team used a VR tracing test and a shuffleboard test to engage the right and left hemispheres, respectively. However, the team found that patients’ response to therapy did not depend on hemisphere damage.

Dr. Nitkin asked whether Dr. Sainburg has considered the roles of the cerebellum and plasticity in these studies. Dr. Sainburg said that he was sure that the cerebellum was engaged, especially for predictive control, but the team has never tested the cerebellum. He predicted that the cerebellum was used for different types of motor learning. He doubted he would see plasticity in patients over the study course of six months.

Dr. Contreras-Vidal asked whether Dr. Sainburg looked at legs. Dr. Sainburg has not studied legs, but there are studies in which legs do arm tasks (e.g., writing in sand). He has colleagues interested in studying leg function.

Dr. Contreras-Vidal suggested using magnets for the study of the cerebellum. Dr. Sainburg said that that could be an interesting approach, especially because the cerebellum is also lateralized.

Dr. Johnson asked about future studies, potentially looking at bilateral synergies between hemispheres. Dr. Sainburg said that he has a colleague activating the non-lesioned side of the brain and creating synergy. He is interested in collaborating with that colleague. At the same time, knowing that the brain is a zero-sum game to some extent, Dr. Sainburg would want to approach these experiments with appropriate expectations.

Dr. Zackowski asked whether Dr. Sainburg has performed these tests on children with hemispherectomies. Dr. Sainburg said that he has not, but that could be an interesting study. He worked with children with CP as an occupational therapist, but he gravitated toward adult stroke patients because he knew that the brain had developed in a predictable way.

Dr. Zackowski asked whether Dr. Sainburg would expect structural changes with this training. Dr. Sainburg said there may be increases in tissue health and functional magnetic resonance imaging (fMRI), but he doubted that he would see changes in individual neurons.

Ms. Yu asked whether age plays a role in changing arm dominance. Dr. Sainburg said that adults who lose a dominant arm through peripheral nerve damage or amputation are very resistant to changing dominance. This resistance may be partially due to training: The arm is not trained to be dominant, even though it is now used every day for new activities. Dominance also has a genetic component. The interplay between genetics and environmental experiences could change as someone ages.

Updates on the 2026 NIH Research Plan on Rehabilitation (4:47:46)

Theresa H. Cruz, Ph.D., Director, NCMRR 
Barbara Bregman, Ph.D., PT, Chair, NABMRR

Dr. Cruz outlined key activities in the timeline for developing the 2026 NIH Research Plan on Rehabilitation:

• February 2024: NIH gathered community input through an RFI.
• May 2024: NABMRR board members discussed RFI responses and goals at the May 2024 meeting.
• June–September 2024: NIH drafted themes.

NIH is going through a second round of gathering public input and feedback that includes the NABMRR working group, Grand Rounds at the Shirley Ryan AbilityLab, an ACRM special session, and the current NABMRR board meeting.

The 2026 draft themes and objectives include the following:

1. Basic and mechanistic studies
   • Support omics-, cellular-, and systems-level research to understand and predict individual recovery from disabling disease or injury
   • Advance precision medicine approaches by supporting the development and use of biomarkers associated with specific injuries, illnesses, and disorders to guide prescription of rehabilitation interventions
   • Investigate the timing and type of physiological and behavioral mechanisms for adaptive and maladaptive changes associated with disabling conditions
2. Social determinants of health (SDOH)
   • Use rehabilitation principles to understand and mitigate systemic causes of health disparities experienced by people with disabilities, including ableism
   • Examine the impact of minoritized identities on receipt and effectiveness of rehabilitation therapies
   • Study the barriers and facilitators to rehabilitation and routine preventive health services for people with disabilities through a health disparities framework
   • Understand and address the impact of comorbidities on rehabilitation
   • Examine the impact of the care delivery environment on rehabilitation outcomes
3. Rehabilitative and assistive technology
   • Support early-stage technology development for rehabilitation
   • Develop the evidence base for device usage in low-resource settings
   • Leverage the resources of the NIH Small Business Program to advance commercialization of products and technology transfer to industry
   • Increase access to rehabilitation services through telehealth and remote assessment, delivery of care, and adherence monitoring
4. Implementation research
   • Work with consumers of rehabilitation to ensure that therapies are desired, acceptable, cost efficient, and easy to use
   • Invest in pragmatic studies that show reproducibility of efficacy studies in real-world settings
   • Plan for adoption and sustainability needs at the beginning of trials
   • Engage with continuing medical education and professional societies to translate findings into practice
5. Training, career development, and infrastructure
   • Develop training programs that provide researchers and clinician scientists at all career stages with access to cutting-edge approaches and methodologies and the insight needed to apply these approaches to advance rehabilitation science
   • Support individual training and career development awards from rehabilitation researchers, as well as early-career awards and pilot funding through grant-making mechanisms to build infrastructure
   • Develop infrastructure to foster team science approaches for rehabilitation researchers across domains of expertise and career stages to create a robust, self-sustaining network
   • Create and implement a strategy for recruiting individuals with disabilities and from underrepresented groups into research careers
   • Train rehabilitation researchers in the ethical use of AI

Draft themes are not inclusive of all rehabilitation research and will require input from consumers.

Dr. Bregman reported the following feedback from the NABMRR working group: adding imaging biomarkers to Theme 1; using a comprehensive approach for Theme 2 that includes language barriers, illiteracy and innumeracy, rural communities, and access to nutrition; adding rehabilitation interventions, including drugs, biologics, and behavior change therapies, to Theme 3; adding generalizability, access, dosing, and collaborations with the FDA and CMS to Theme 4; adding team science and emphasizing data sharing and innovation in Theme 5; and socializing beyond rehabilitation meetings.

Dr. Cruz said that attendees at the Grand Rounds discussion were supportive of the themes and had a spirited discussion about the role of NIH in technology development.

The ACRM audience largely comprised early- to mid-career researchers, of whom 50% had not yet applied for NIH support. Two-thirds of participants were aware of the research plan, and one-third had referenced it when applying to NIH. The audience supported the current themes and suggested adding health services or learning health systems to the themes.

Discussion (5:04:43)

Dr. Cruz asked the board to share final considerations on the 2026 NIH Research Plan on Rehabilitation. Dr. Nitkin added that the plan should be inspirational to the field, show the larger constituency that the NABMRR understands their needs, and be actionable.

Dr. Johnson agreed with the themes and the working group’s suggestions. She said that she would not remove technology from the plan. She recommended adding details under Theme 4 that prioritize research being used and translated in the hands of the individual. She also said that mobile health or mobile technology may need to be considered under rehabilitative assistive technology.

Dr. Cramer said that in treating patients with stroke, he has seen patients go from a hospital to an outpatient physical therapy site and then to primary care. He wanted to see more integration and communication across those centers. He said that the themes could have objectives that address the lack of integration and communication among those sites.

Dr. Zackowski advocated for true collaboration between basic and rehabilitation sciences in Theme 1.

Dr. Sainburg felt that technology and devices should be integrated throughout the themes and not designated as a separate category.

Mr. Cooper asked whether NIH would consider using the term drivers instead of determinants in SDOH, noting that the latter can be seen as fatalistic. Drivers is also more public health focused. Dr. Cruz said that the NABMRR is working with NIMHD to ensure that terminology is used appropriately. The ICs will harmonize whatever terms they use.

Dr. Valero-Cuevas said that effective translation means starting with the problem. This idea can be especially important when designing devices or other new technology. Dr. Nitkin agreed; the NCMRR has funded courses through an R25 grant that expose engineers to the everyday needs of people with disabilities to get the engineers to think about designs that directly address such problems.

Ms. Yu noted the importance of considering barriers to use. She asked how humanization of care is implemented throughout these themes. Dr. Cruz said that NIH is emphasizing communication with the end user across the entire research process. Ms. Yu said patients can feel disempowered if they do not understand the terms being used while discussing their treatment. Cross-collaboration with researchers and bringing patients into the research process can ensure that patients have agency and dignity over their care. Dr. Cruz agreed that there is more to be done to improve patient communication.

Ms. Hardy Heinz recommended that training include exposure to people with lived experience. Dr. Cruz agreed with this suggestion.

Dr. Contreras-Vidal noted that users and pediatrics were not emphasized in the themes. He agreed with keeping technology development in the plan. He asked whether there were possible synergies that could lead to better inclusion of the humanities and community arts in the plan.

Dr. Cruz said that the plan needs to be somewhat agnostic as an NIH-wide plan, meaning that pediatrics likely will not be called out. Dr. Nitkin added that lifespan approaches were highlighted in a previous version of the research plan. Dr. Cruz also said that humanities and culture could likely be interpreted in multiple ways and considered in SDOH.

Responding to Dr. Sainburg, Dr. Johnson said that technology should still be a central theme, in addition to being featured in the finer details. This approach allows the themes to fully capture the ways that technology can influence interventions, basic mechanistic work, and training while not being the sole driver of everything in the plan.

Dr. Okanlami appreciated the clarification that the plan was NIH-wide. Dr. Cruz said that NIH wants better representation of disabled researchers across ICs.

Dr. Blanton was excited for the training theme and its potential to include medical education and professional societies. She felt that as therapy moves along, there is always a lag in training clinicians on implementation and support. She said that NIH will need to consider how humanities should be tied to humanism and the lived experience. NIH could look to the National Endowment for the Humanities to implement humanities-based strategies in mitigating the causes of health disparities and barriers to care.

Dr. Cruz encouraged board members to contact her with other ideas regarding the plan. Socializing the plan with the community will include the following:

• January 2025: Issue a second RFI.
• February 2025: Attend the Association of Academic Physiatrists annual meeting.
• March 2025: Attend the NIH Rehabilitation Conference.
• April 2025: Attend the American Society of Neurorehabilitation annual meeting.

Dr. Cramer and Dr. Johnson suggested sharing the plan with rheumatologists and stroke support groups. Dr. Johnson said that many of these groups will be at RehabWeek 2025 in Chicago.

Nominations and Election for Chair (5:36:14)

Barbara Bregman, Ph.D., PT, Chair, NABMRR

Dr. Nitkin said that Dr. Bregman’s last meeting as chair will be at the May 2025 board meeting. He called for nominations for the next NABMRR chair. Dr. Bregman said that being the chair was easy because of Dr. Cruz’s and Dr. Nitkin’s phenomenal work.

Dr. Zackowski expressed interest in offering help in any way that was needed. She wanted to keep rehabilitation strong and enjoyed being part of the group.

No other nominations were made. Dr. Zackowski will become NABMRR chair at the conclusion of the May 2025 meeting.

Recess (5:38:17)

Barbara Bregman, Ph.D., PT, Chair, NABMRR

Dr. Nitkin thanked the VideoCast viewers, the board members, and the board’s four new members. He adjourned Day 1 of the meeting at 4:53 p.m. ET.

Day 2: December 3, 2024

Access the VideoCast recording of the second day of the December 2024 NABMRR meeting.

Welcome (00:06)

Barbara Bregman, Ph.D., PT, Chair, NABMRR

The meeting resumed at 10 a.m. Dr. Nitkin welcomed everyone to Day 2, reviewed the meeting agenda, and noted that the VideoCast recording and meeting minutes would be available online.

Update on the Implementation of NIH’s New Grant Review Process (1:13)

Valerie Durrant, Ph.D., Center for Scientific Review

Valerie Durrant, Ph.D., provided an overview on changes to the NIH peer review process. NIH has a two-level peer review system: In Stage 1, the Center for Scientific Review (CSR) is involved in the evaluation of scientific merit. In Stage 2, the respective institute advisory council considers peer-review outcomes, recommendations for funding, and advice on programmatic priorities. CSR works as the service center for all NIH. Its mission is to ensure that NIH grant applications receive fair, independent, expert, and timely scientific review that is free from inappropriate influences so that NIH can fund the most promising research.

In FY 2024, CSR reviewed more than 66,000 applications—more than three-fourths of what NIH receives. The vast majority of these applications were for R01, Small Business Innovation Research (SBIR), fellowships, and cross-institute initiatives and activities. This work involved more than 19,000 reviewers, 255 Scientific Review Officers (SROs), and more than 1,200 review meetings.

The motivation for examining the application review process included the following:

• The organization of peer review criteria had become too complex.
  • This was persistent feedback provided from reviewers and observed by NIH staff.
  • Reviewers noted the expansion of administrative and policy compliance expectations.
• There were concerns of undue influence of reputation in the NIH peer review.
  • These concerns came from the community.
  • Observations also came from NIH staff and leadership.

To address these concerns, the following changes will be implemented:

• The existing five review criteria will be reorganized into three factors.
• The Investigator and Environment criteria will be evaluated as “sufficient” or “gaps identified.” They will be considered in the overall impact score but will not receive an individual score.
• Additional review criteria related to human subjects, such as inclusions and study timeline, will be evaluated within the second factor for more rigorous review.
• Most Additional Review Considerations will shift from reviewers to NIH staff.

The new review factors will be Importance of Research, Rigor and Feasibility, and Expertise and Resources.

These review changes will affect the vast majority of research applications, except SBIR and STTR applications, with due dates on or after January 25, 2025. These applications will be reviewed at summer 2025 peer review meetings and at the October 2025 council.

Dr. Durrant noted that all applications need to come in under current Notices of Funding Opportunities (NOFOs). CSR is reissuing current NOFOs so that they have new information related to dates eligible and these review changes. Parent funding opportunities will start being reissued this year. The NIH Guide for Grants and Contracts website and Weekly Index can provide up-to-date information on the changing review process.

The new review framework for research project grants does not involve changes in applications. There is a simultaneous and concurrent change in forms, which happens every few years. FORMS-I will be reissued soon for use with applications due on or after January 25, 2025. Applicants can visit the FORMS-I notice and the Application Guide for more information.

NIH has been changing its review systems, issuing continued guidance for applicants and reviewers, updating and publishing funding opportunities, and adding new application packages to opportunities for due dates on or after January 25, 2025. The remainder of the rollout plan includes:

• January 2025: Apply the new framework to applications due on or after January 25, 2025.
• Spring 2025: Train reviewers on the simplified review framework.

When preparing applications, Dr. Durrant again noted that the application is not changing. The review framework affects only how reviewers evaluate applications. Applicants should always be responsive to both the application and submission information in Section IV and the review criteria in Section V of the NOFO when writing their application. Resubmission applications will be reviewed as they are presented at the time of receipt, using the framework in place for that application due date. The new review framework will not affect how resubmission applications are written. Applicants can visit the Application Submission System and Interface for Submission Tracking (ASSIST), the grants.gov workspace, and other institutional systems to move an existing application draft to a different funding opportunity.

The new framework has been implemented with the goal of improving the quality of review by giving reviewers the time and space to focus on the importance of the proposed research. The new framework should also provide more consistency when considering the investigators and their environments. CSR will monitor critiques, discussions, and scoring patterns from the new framework to look for deviations from the current system and ensure reviewer alignment. Reviewers and staff will have access to slides, videos, discussions with chairs, and guides to writing critiques and comments for training purposes. These materials will be deployed in the spring.

Dr. Johnson asked whether reviewers will still examine subjects, budget, and resources. Dr. Durrant said these elements are still part of the review so that reviewers can raise any relevant concerns during discussion. There will also be no changes to the overall impact scoring scale of 1–9, how the percentile is managed, or scoring for the first two factors. Under the new framework, the budget will not directly affect the proposal’s score. Reviewers will also look at the big picture of whether the budget is appropriate, rather than conducting a line-by-line budget assessment. The third factor will not have a 1–9 score but will be deemed “appropriate” or “gaps identified.”

Dr. Okanlami asked how reviewers will consider inclusion of women and minorities. Dr. Durrant explained that these considerations will be part of scoring Factor 2. This information is also still in the application.

Dr. Johnson asked how data management and sharing are evaluated. Dr. Durrant said these will not be part of review considerations. CSR tried to remove elements with a heavy policy definition, where a program can do a better assessment than reviewers. Dr. Cruz added that reviewers will not see data management and sharing in the application. She noted that data management and sharing are different from resource sharing. Some NOFOs may still have resource sharing, but not for all applications.

Dr. Durrant said there are also concurrent changes in fellowship applications, which will have the same timing and similar changes. These changes should enable better focus on three key assessments: Candidate Preparedness and Potential, the Research Training Plan, and the sponsor’s Commitment to Candidate. These changes should also ensure that a broad range of candidates and research training contexts are considered in review and reduce bias in the review process. Applicants and sponsors can visit the Guide Notice for additional information.

Reviewing the new criteria, Dr. Durrant highlighted that Candidate Preparedness and Potential considers a wider range of indicators for scientific potential and preparedness. The Commitment to Candidate evaluates the sponsor’s environment framed in the context of their contributions to an applicant’s scientific training. The sponsor’s extramural funding is not considered by peer reviewers. Applicants will also have a revised application that aligns with these new criteria. The application emphasizes the quality of the training plan. Grades are not allowed. The application is also shorter and more structured and reduces boilerplate language. These changes in review will be applied for applications with due dates on or after January 25, 2025. The information from Dr. Durrant’s presentation and additional updates to both research project grants and fellowships can be found online.

Dr. Durrant concluded her presentation by saying that these changes are among many ways CSR works to promote the highest-quality and fairest reviews. Applicants and reviewers are also encouraged to report instances of unfair review directly to CSR at reportbias@csr.nih.gov. CSR carefully investigates every allegation and consideration. If CSR agrees that there was a biased or flawed review, the center re-reviews with the least possible penalty to the PI and works to avoid funding delay. If CSR does not agree with the allegation, investigators can still go through the standard appeal process. CSR does many other activities and follows up with reviewers to foster culture change in the review community.

Discussion (38:16)

Dr. Johnson pointed out that something said in peer-review discussion could have an impact on the scoring, regardless of whether it gets into the final written critique. Dr. Durrant admitted that this could happen. Written critiques from assigned reviewers are released largely unedited, but sometimes specific issues get resolved in discussion. CSR welcomes feedback on this process and tries to make the summary statement as transparent as possible.

Dr. Sainburg praised the changes, especially removing mentor and institutional bias from training awards. He thanked all involved in the process.

Referring to Dr. Johnson’s question, Dr. Contreras-Vidal said that it is up to reviewers to reduce pain and bias. Reviewers need to be more careful as they read and address comments.

Dr. Contreras-Vidal asked whether programs could provide additional resources for reviewers assessing the budget for data management and sharing. Dr. Cruz confirmed that additional resources can be sent.

Dr. Johnson asked how NIH is handling the use of AI in application review. Dr. Durrant said NIH policy says that reviewers should not be using AI when reviewing applications because of confidentiality and the scientific knowledge included in the proposal. This policy does not apply to application writing. NIH teams use AI for efficiency and quality, but they follow careful policies to make sure its use is within internal systems. Dr. Durrant said she realized that AI is a rapidly moving field that raises both benefits and concerns. OER is the major organization within NIH guiding AI use.

Dr. Nitkin thanked Dr. Durrant for her presentation and thanked the peer reviewers. He has always been impressed with the work that goes into the review process and the effort to be honest, fair, and open. The review process is what drives NIH. Dr. Cramer agreed that the integrity of reviewers is key and will not be removed by external forces.

As discussion closed, Dr. Bregman alerted board members to a town hall from NIHMD on December 4, 2024, seeking input on rehabilitation.

A Brief Story of Brain–Computer Interfaces (BCIs): From Implantable to Aesthetic BCIs to Understanding the Brain and Engaging the Mind (48:57)

Jose Contreras-Vidal, Ph.D., Hugh Roy & Lillie Cranz Cullen Distinguished Professor, Department of Electrical & Computer Engineering, and Director, IUCRC Building Reliable Advances and Innovations in Neurotechnology Site, Noninvasive BMI Systems Lab, University of Houston

BCIs can provide hope for people wishing to restore a sensory modality. They can also affect our understanding of how we see the world. BCIs can be defined as an additional communication channel of the brain with the world, using non-normal output “pathways of peripheral nerves and muscles.” Dr. Contreras-Vidal showed an example of an implantable BCI (iBCI) to review its basic design and how it records and decodes brain activity.

No iBCIs are currently approved for medical use, despite being used in clinical trials since 1998. Participants in these trials had spinal cord injury, motor neurodegenerative disease, amyotrophic lateral sclerosis, or stroke. In these trials, iBCIs showed clinically viable results. Dr. Contreras-Vidal showed several examples of promising iBCIs that included the Swiss Federal Technology Institute of Lausanne iBCI to restore walking and both BrainGate and University of California, San Francisco, iBCIs restoring speech. Dr. Contreras-Vidal also provided Neuralink, which gives the ability to control a computer or mobile device, as an example of industry investment in iBCIs.

Dr. Contreras-Vidal also found in his review that women were underrepresented in iBCI research and were implanted later in life. These findings follow historic trends of women in peak reproductive years being excluded from research, likely in part because of the FDA’s 1977 guidance document recommending the exclusion of those who are pregnant or of childbearing potential. The FDA has since worked to broaden pregnant women’s representation in clinical trials in a number of ways, including developing the Task Force on Research Specific to Pregnant and Lactating Women (PRGLAC). Dr. Cruz noted that NICHD has been a significant federal member of PRGLAC. Dr. Contreras-Vidal said that women may also be more likely to decline participation. Women are more likely to experience partner abandonment after serious illness such as cancer, and partnerless women are less likely to participate in clinical trials. The high level of commitment to participate in an iBCI trial may therefore create significant barriers to women’s participation in these clinical trials.

As of December 2023, 2,380 months of participant iBCI data had been collected, with BrainGate accruing 21% of the total. Although participant privacy and data misuse are important considerations, only 39% of publications included a data sharing statement, and only one-third of these publications included a direct link to access data. A data sharing statement does not mean data will be shared. Dr. Contreras-Vidal suggested federal protections could better balance data sharing needs with privacy considerations so that participants will not face repercussions that could disrupt their health insurance and daily lives. More data sharing could help answer fundamental neuroengineering topics that would advance the iBCI field, including the enhancement of AI/ML algorithms, improving electrode and signal longevity, standardization, and benchmarking procedures. At the same time, data management and anonymization require data repositories and funding to properly maintain them. Proper maintenance is especially crucial if data are considered part of a patient’s medical record and are subject to retention laws. Data may need to be retained 5 to 10 years post-treatment, costing hundreds of dollars a month.

Answering several questions from board members, Dr. Contreras-Vidal said he was unsure whether patients kept diaries during the clinical trial but agreed they would be useful. Decoding algorithms have also become more generative and are continuing to evolve with the use of AI.

Dr. Contreras-Vidal next provided an overview of his work in neurorehabilitation for stroke survivors. He and his research team developed an EEG-based BCI, which enables a robotic aide to facilitate arm and hand movements. The team then measured benefit post-intervention. A clinical trial of 10 participants undergoing 12 therapy sessions showed a significant change from baseline two weeks after treatment, and therapeutic benefits were retained for two months. Most participants recovered clinically relevant functional movements (PMID: 33395991).

The study had several drawbacks. BCI intervention could be done in the lab only by using expensive equipment with a one-of-a-kind robot. The equipment also required a technical assistant for use. Dr. Contreras-Vidal went to the FDA to develop NeuroExo, a low-cost, mobile EEG-BMI. Developing this system required upgrading firmware, replacing the USB-C port, redesigning the battery, revising software, and reinforcing the device. However, this system is now designed with the user in mind and has a patent under development.

Dr. Contreras-Vidal showed a performance of LiveWire, featuring dancers performing as representations of their skull maps appeared in real time. Analyzing these data gives Dr. Contreras-Vidal the opportunity to understand the human creative process from a neural perspective, a topic of interest to neuroscientists.

Dr. Cramer asked whether it was possible to create a robot that makes the dancer’s movements based on the collected recordings. Dr. Contreras-Vidal has previously seen that the robot’s movements are very stiff. Movement could become smoother once the skeletons of robots improve.

Several board members asked whether synchronized signals could be attributed to listening to the same music. Dr. Contreras-Vidal said he has done studies in jazz musicians while they are improvising and has seen similar signals.

Dr. Johnson noted that the studies presented go from focusing on delta waves to focusing on gamma waves. She asked for the rationale in changing. Dr. Contreras-Vidal said that he first studied delta waves in stroke patients because the algorithm he used to predict intent measured delta amplitude. He then studied gamma waves in his studies of dancers, because that was where synchrony in signals was the strongest.

Dr. Contreras-Vidal concluded his presentation by saying that he is expanding his arts and humanities studies to work with children. The combination of music, dance, and BCI technology allow for new avenues of engaging with the public while enabling studies of neuromodulation, functional mapping, and affective science. AI and ML algorithms can also be combined with music and dance to enable personalized art therapy. Finally, Dr. Contreras-Vidal is also combining AI and ML in robotics with BCIs to develop expressive neurobiotics, digital twins, and biomarkers.

Dr. Nitkin thanked Dr. Contreras-Vidal for his review of the literature and for raising these ethical issues.

Strategies for Doing Community-Engaged Research with Disability and Aging Communities: Promoting Outcomes, Impact, & Keeping it Real (1:59:26)

Dorothy Farrar Edwards, Ph.D., University of Wisconsin–Madison 
Joy Hammel, Ph.D., OTR/L, University of Illinois at Chicago (UIC)

Dorothy F. Edwards, Ph.D., works to improve recruitment for large, longitudinal studies and clinical trials. Joy Hammel, Ph.D., does community-based participatory research.

Dr. Hammel is a professor at UIC and a member of a disability community. She has been a community-engaged researcher for more than 35 years. She acknowledged the disability and aging community members and organizations that have collaborated with her and Dr. Edwards.

Community-engaged research (CEnR) is the process of collaborating with and through groups of people. The communities that researchers engage with can be based on geography, a shared situation, or a shared identity. Some are virtual. CEnR focuses on improving the health and well-being of these communities and at the population level. It can also be a catalyst for changing practices and policies.

CEnR has a rich history. This includes work from Paolo Freire, who used principles of participatory action research working with oppressed communities in Brazil. Health researchers later applied principles of community-based participatory research to study how interactions with the community could directly affect health outcomes.

Disability communities have a long history of marginalization in health research, despite organizations like the Centers for Disease Control and Prevention (CDC) working to raise awareness about disability’s universal impact. Adults in the United States have a 25% chance of having a disability. People with disabilities as a group experience SDOH that make it difficult for them to access health care and be involved in health research. NIH is working to change these trends by recognizing disability communities in specific ways. For example, NIMHD declared people with disabilities as a disparity group. NIH also has criteria requiring researchers to explain how they will engage with the disability community and represent their lived experience. Dr. Hammel noted that, within the disability community, there are also diverse disabilities people can experience.

CEnR can be represented on a continuum. On one end, health care researchers lead engagement. On the other end, the community is participating in, initiating, and even leading research. This kind of engagement enables more opportunities for community empowerment, capacity building, and building of long-term systems of change.

Researchers interested in CEnR with disability and aging communities should ensure the following are featured in their projects:

• Voices from the community that are respected and responded to
• Accessible, equitable, and meaningful participation
• Responses to and strategies addressing societal barriers
• Power, control, ownership, and leadership within the community
• Plans on how the research will move toward action that benefits the community

Dr. Edwards then explained community engagement through the lens of recruitment science. Research participation is a behavior, and behaviors can be predictable. However, the decision to participate in randomized controlled trials or long-term care begins in the community. If people do not see the sponsoring institution as a place where they will receive good care, the likelihood of recruiting a representative sample is unlikely. Dr. Edwards illustrated this principle with research demonstrating under-enrollment of people with disabilities, especially for those who come from racial and ethnic populations that are underrepresented in biomedical research (PMID: 33225207).

Such under-enrollment can result in 25% of studies closing without reaching target enrollment numbers, perpetuating a lack of diversity in biomedical research. Additional consequences of failing to recruit and retain participants can include:

• Inconclusive or invalid results
  • Reduced statistical power and greater potential for type 2 errors
• Protracted accrual and trial fatigue
  • Diminished commitment
  • Loss of motivation
  • Staff turnover
  • Unbalanced workloads and high stress
• Ethical concerns regarding exposing consented participants to study risks with no corresponding benefit if the hypotheses (treatments) are not testable
• Lack of generalizable results, perpetuating health disparities

Dr. Edwards leads a core of researchers at her university considering public and participant investment in dementia research. The National Institute on Aging (NIA) has also pushed researchers to consider the roles of the public and participants throughout the steps of the research cycle:

1. Identification and prioritization of research aims
2. Design of research proposals and methods
3. Research conduct and management
4. Research analysis
5. Dissemination of findings
6. Implementation of research findings
7. Assessment of the impact of public and participant input on research

Dr. Edwards is also part of an NIA R33 Community Academic Aging Network, a program meant to bring voices of older adults into health research. During its first funding cycle of five years, the network:

• Collaborated with aging network service providers and advocacy groups
• Trained research liaisons from partner organizations to represent health systems and African American stakeholders
• Provided multidisciplinary experts to consult on the design phase of interventions
• Created and supported community advisory boards to provide input throughout all stages of project development and implementation
• Created tailored advisory boards with subject matter expertise

The network also supported a number of projects within its first funding cycle, including projects evaluating community health work, identifying long-term cognitive and functional effects of Long COVID, improving recruitment of Black older adults to Alzheimer’s prevention studies, and testing mental health interventions. Substantive intramural and extramural funding have supported this wide variety of projects. With its renewed funding, the new R33 focuses on inclusion of older adults, especially from rural and Black communities, for the use of assistive devices. The University of Wisconsin–Madison School of Engineering has been brought on as a partner, and engineers from the school are getting community feedback that influences their designs.

Dr. Hammel shared a second example of CEnR to improve health, community living, and social participation with disability and aging communities. Dr. Hammel said that, when doing CEnR, it is important to listen to high-priority issues participants are facing. One issue was raised by people with severe disabilities living in nursing homes. These participants wanted the right to choose where they lived and would prefer to live in a community with proper supports as opposed to a nursing home.

This need inspired the Stepping Stones Program, designed to assist people with disabilities in gaining community living skills and moving out of nursing homes. The disability community has been a full partner in defining, investigating, and strategizing issues affecting this program. The goals of the program were to increase health, community living, and social participation opportunities; effect systems change; and build community capacity.

The program used community-engaged strategies throughout the entire process. Members of the disability community and representatives from centers for independent living were brought in as salaried staff within the research team. The program also featured diverse representation, recruitment, and retention of those who were most likely to end up in a public home. Because many of these people lived below the poverty level, the team used an underground network to talk to people about their rights. Accessibility and accommodations were also built into the program budgets and operations so that people could equitably engage as researchers and as participants. For example, the program team advocated for providing food to research participants, because many were without access to food or were having their food withheld at nursing homes.

In summary, the Stepping Stones Program was designed for people with diverse disabilities who ended up in public institutions. The program provided them the stepping stones to get out by teaching them about their rights; finding housing and transportation; acquiring prescriptions; and developing strong networks of social support that support health and wellness. The research team was able to co-create and co-deliver clinical trial evaluations with sustained impact, including:

• Evidence from CEnR used in three class action lawsuits mandating Illinois Medicaid to provide equitable opportunities to live in the community with supports
• Illinois Medicaid funding Stepping Stones
• Stepping Stones’ delivery by disability organizations to more than 1,000 people
• Disability community collaboration on federal grants focusing on health, community living, and social participation programs for people with stroke, IDD, TBI, and mental health or psychiatric disabilities
• Continued collaboration between the disability community and UIC studying disparities in community living and getting into the workforce

Acknowledging that they are preaching to the choir, Dr. Edwards closed their presentation with the following recommendations:

• Establish community partnerships with a commitment to shared authority.
• Recognize the value of lived experience and expertise of community partners.
• Be intentional—ensure inclusion of voices that are not usually heard.
• Have multiple community representatives so that investigators do not outnumber community partners.
• Adopt inclusive language, titles, roles, and responsibilities.
• Demonstrate appreciation and ask what incentives are best.
• Offer trainings for both researchers and community partners.
• Make long-term plans and work toward shared short-term goals.
• Commit to honesty and transparency, but do not over-commit.

Members were encouraged to reach out to Dr. Edwards (dfedwards@wisc.edu) and Dr. Hammel (hammel@uic.edu) with additional inquiries.

Discussion (2:51:40)

Ms. Hardy Heinz thanked both presenters. She asked Dr. Edwards how she was connected to Ms. Peterson-Gaines, her community partner. Dr. Edwards said that the NIA R33 she is funded through connected investigators with community partners. Ms. Peterson-Gaines was also funded through the R33.

Mr. Cooper praised the presentation. He highlighted that diversity includes the type of disability, race, ethnicity, and other demographic characteristics. He asked the presenters what they have done to make sure their studies do not exclude people with certain disabilities, especially those from IDD communities. Dr. Edwards said that Ms. Peterson-Gaines has a Patient-Centered Outcomes Research Institute grant to work with people with IDD. Dr. Edwards also has personal experience facing backlash for not including members of the IDD as a previous site manager for the NIH All of Us Research Program. Ms. Peterson-Gaines had a toolkit on working with people with IDD and provided important feedback based on her experiences working with the Special Olympics. Dr. Edwards’ next project will have representation from that group from the very beginning.

Dr. Hammel agreed with Mr. Cooper that people have diverse disabilities and often have more than one. She also agreed on the importance of representing intersectionality. Dr. Hammel has a NIDILRR grant working with the IDD community on community living and participation. She also has a strong network of IDD groups that include self-advocates, The Arc, national organizations, and advocacy groups run by people with IDD for people with IDD. These groups spoke with Dr. Hammel and her research team about how to handle consent and helped developed community-based consent with pictures and visuals that made consent accessible. Dr. Hammel is also working with her own university to change practices for inclusion. For example, people with IDD can be excluded from research at her institution because assessments have preempted them from participation. She is working on revalidating those tools so potential participants with IDD are not screened out, and she is questioning inclusion and exclusion criteria.

Dr. Edwards also highlighted that NIH review asks for inclusion of groups across the lifespan. People who understand recruitment can stop funding until researchers properly address such recruitment. She encouraged board members on study sections to look at those criteria.

Dr. Nitkin appreciated the presenters’ point that diversity makes for more effective studies that are more generalizable and do not need 17 years to get into the community.

Dr. Zackowski said that the National MS Society has a community review of research, which features a committee made up of people affected by MS. Scientists on the committee are there only to translate work and provide direct comments to applicants on how to avoid jargon and make their work more accessible. The committee also has office hours where scientists work to make their study make sense to a general audience. She asked the presenters for advice on how to teach people to write in plain language about their work.

Dr. Edwards said that this is a big challenge she faces. The University of Madison–Wisconsin has a Department of Life Sciences Communication, and the students review publications. The Clinical and Translational Science Award program also has a review panel that has a strict plain language summary requirement. Only about 30% of applications get through this review, and they are not funded until this requirement is satisfied. However, the scientists will often return to using jargon once they get funding and write their publications.

Dr. Hammel said there are journals in the IDD community that force researchers to give plain language summaries. She encouraged professional organizations to provide examples and workshops on writing in plain language. Dr. Hammel said there are also resources that teach researchers how to do cognitive interviewing with community members.

Referring to the CDC pamphlet on disability shown during the presentation, Mr. Cooper pointed out that many people featured on that pamphlet would not view themselves as part of the disabled community. He said that engagement needs to take this issue into consideration.

Planning for the Next Meeting (3:08:40)

Theresa H. Cruz, Ph.D., Director, NCMRR

Dr. Cruz asked NABMRR members to email her or Dr. Nitkin with potential topics for future NABMRR meetings. The NABMRR will also be recruiting seven new members to the board. Dr. Cruz asked board members to consider nominations, which can come from the scientific community or the public.

Brief follow-up correspondence from board members included these suggestions for future discussion topics:

• Outcomes used to assess a treatment or patient response, including what makes a “good” outcome, the pros and cons of using a single outcome measure versus combined measures, and hard clinical outcomes.
• An overview and update on RECOVER, with emphasis on progress toward understanding Long COVID across autonomic, cognitive, sleep, fatigue, and viral persistence domains. The speaker could also touch on outcomes measures being used.

Adjournment (3:09:23)

Barbara S. Bregman, Ph.D., PT, Chair
Theresa H. Cruz, Ph.D., Director, NCMRR
Ralph Nitkin, Ph.D., Deputy Director, NCMRR

Dr. Cruz thanked the NIH support team, VideoCast support, and logistics. Dr. Nitkin thanked Drs. Hammel and Edwards again for their presentation. Dr. Bregman thanked the members of the NABMRR for their active participation.

Dr. Bregman adjourned the meeting at 1:58 p.m. ET.