Summary Minutes – December 4-5, 2023

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

 

Board Members Present:

Sarah Blanton
Cheri A. Blauwet (virtual)
Barbara S. Bregman, Chair
Jose Luis Contreras-Vidal
Steven C. Cramer (virtual)
Dawn M. Ehde
Linda Ehrlich-Jones
Flora Hammond

Michelle J. Johnson 
Steven J. Keteyian (virtual)
Robert L. Sainburg
Michael Wade Shrader (virtual)
Kris Tjaden (virtual)
Francisco Valero-Cuevas (virtual)
Lewis A. Wheaton (virtual)
Kathleen M. Zackowski

Board Members Absent:

None

Ex-Officio Members Present:

Diana W. Bianchi, NICHD (virtual)
Daofen Chen, NINDS
Theresa Cruz, NCMRR
Patricia Dorn, VA
Robert Eisinger, DPCPSI (virtual)
Anjali Forber-Pratt, NIDILRR 
Lyndon Joseph, NIA

Matt LoPresti , DoD
Ralph Nitkin, NCMRR
Merav Sabri, NIDCD (virtual)
Edward Vitelli, ED (virtual)
Chuck Washabaugh, NIAMS (virtual)

Ex-Officio Members Absent:

Jerome L. Fleg, NHLBI
Tara A. Schwetz, DPCPSI

Day 1: December 4, 2023

The VideoCast recording of the first day of the December 2023 NABMRR meeting is available online. Time stamps (in parentheses) direct readers to each related section of the meeting recording.

Welcome, Approval of Minutes, and Future Meetings (0:05)

NCMRR Deputy Director and NABMRR Executive Secretary Ralph Nitkin, Ph.D., opened the meeting at 9 a.m. Board Chair Barbara S. Bregman, PT, Ph.D., welcomed the participants and called the roll. She introduced three new board members: Sarah Blanton, PT, DPT, FNAP; Steven Cramer, M.D., M.Sc., FAAN, FAHA; and Linda Ehrlich-Jones, Ph.D., RN, FAAN. The board voted to approve the minutes of the May 1–2, 2023, meeting as written. Future meeting dates are as follows:

  • May 6–7, 2024
  • December 2–3, 2024
  • May 5–6, 2025

NCMRR Director’s Report (10:45)

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

Dr. Cruz reported on NCMRR staff updates, activities, collaborations, and research efforts. She also provided an update on the NIH grant review process.

Staff Updates (11:11)

June Lee, M.D., Ph.D., special assistant to the NCMRR director, started in May. Her background is in pharmacology, but her passion is in artificial intelligence (AI). Program Officer Toyin Ajisafe, Ph.D., completed the NIH leadership training program. Dr. Cruz and NCMRR staff members Joe Bonner, Ph.D., Sue Marden, Ph.D., RN, and Maria Nurminskaya, Ph.D., each received a 2023 NICHD Director’s Award.

Activities (12:39)

  • RFA-HD-24-007: Understanding and Mitigating Health Disparities experienced by People with Disabilities caused by Ableism (R01 Clinical Trial Optional) released in August and closed on November 30. The request for applications (RFA) received many responses; NCMRR will share a list of funded awards during the December 2024 NABMRR meeting.
  • Based on feedback from the field, NCMRR has made changes to its R03 early career research award; there are now three due dates per year rather than one, to allow researchers to respond to reviewer comments and resubmit quickly.
  • Between May and November, NCMRR staff attended 13 in-person meetings.
  • In July, Dr. Cruz attended the third Global Rehabilitation 2030 meeting at the World Health Organization (WHO) headquarters in Geneva, Switzerland. The purpose of the meeting was to acknowledge the adoption of the “Strengthening Rehabilitation in Health Systems” resolution during the 76th World Health Assembly. This was the first time that WHO recognized the importance of rehabilitation and its need to be a part of universal health care. The meeting also showcased new products designed with support from NIH to address key rehabilitation challenges in various countries and launch the World Rehabilitation Alliance, a global network of stakeholders focused on promoting rehabilitation as an essential health service.
  • The White House’s Office of Science and Technology Policy invited Dr. Cruz to its “American Possibilities: A White House Demo Day.”  The event, held November 7, showcased a variety of technologies and devices, including seven devices related to rehabilitation.

Collaborations (20:55)

NCMRR is collaborating with the following NIH institutes and centers (ICs) on workshops and programs:

NCMRR also collaborates with other federal agencies. A few years ago, NCMRR collaborated with the Centers for Disease Control and Prevention (CDC) to create a supplement for the Pregnancy Risk Assessment and Monitoring System (PRAMS) to understand the intersection between pregnancy and disability. Recently, CDC and NCMRR wanted to understand the prevalence of stressors experienced due to the COVID-19 pandemic among people by disability status with a recent live birth. Data collected by the Disability and the Maternal COVID-19 Experiences PRAMS supplements showed that people with a disability had more stressors during the COVID-19 pandemic. These stressors were related to economic issues, housing, childcare, food insecurity, mental health, and partners. People with disabilities were also more likely to experience three or more of these stressors during the pandemic. These results show important areas of future research priorities for NCMRR.

Science Advances (30:20)

Dr. Cruz shared two recent publications supported through the Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative. These studies are U.S. Food and Drug Administration (FDA)–approved early feasibility, first-in-human trials.

  • Cerebellar deep brain stimulation for chronic post-stroke motor rehabilitation: a phase I trial (PMID: 37580534)
    • This study looked at the safety and feasibility of deep-brain stimulation in the cerebellum, combined with traditional rehabilitation to improve upper-limb outcomes following stroke. Most study participants showed significant improvements; however, the people who were more impaired before the intervention did not see the same improvements as people who started with moderate impairments. The researchers also analyzed cortical metabolic changes related to the intervention to begin elucidating the mechanism of this intervention.
  • First-in-human prediction of chronic pain state using intracranial neural biomarkers (PMID: 37217725)
    • This study focused on finding signatures of pain by using intracranial neural biomarkers. Participants were implanted with electrodes targeting the anterior cingulate and orbitofrontal cortices. The researchers collected ambulatory neural recordings and pain scores over several months. Even though there was great variability between the participants, the researchers found that orbitofrontal cortex activity is a biomarker of chronic pain. These results could inform closed-loop deep brain stimulation therapy for pain management.

Dr. Cruz also shared the following co-funded studies:

  • OpenCap: Human movement dynamics from smartphone videos (PMID: 37856442)
  • Leveraging football accelerometer data to quantify associations between repetitive head impacts and chronic traumatic encephalopathy in males (PMID: 37340004)

NIH Review Updates (37:23)

During the May NABMRR meeting, a representative from the Center for Scientific Review (CSR) shared changes to the NIH grant reviews. Based on reviewers’ feedback, the consensus was that the peer review criteria had become too complex, drawing attention away from evaluating the scientific merit of applications. Also, there was undue influence and bias on scoring investigator and environment criteria. A CSR study with anonymized applications showed that minoritized applicants from prestigious universities did not receive the same boost in scores for the investigator and environment criteria as White applicants did.

To address these issues, NIH is implementing a simplified peer review framework beginning with grants that have January 25, 2025, submission due dates. The simplified framework will keep the five regulatory criteria (significance, investigators, innovation, approach, and environment) but reorganize them into the following three factors:

  • Importance of Research. This factor will include the significance and innovation regulatory criteria and will be scored from 1 to 9.
  • Rigor and Feasibility. This factor will include the approach regulatory criterion as well as inclusions and study timeline for clinical trials. This factor will be scored from 1 to 9.
  • Expertise and Resources. This factor will have the investigator and environment regulatory criteria and be marked as “appropriate” or “gaps identified that require explanation.” Although this factor will not have an individual score, it will be considered in the overall impact of the application.

There will no longer be separate review criteria for study timelines and inclusion for clinical trial applications; instead, those items will be included as part of the approach criterion.

Also, to reduce reviewer burden, most of the additional review criteria that have no effect on the overall score will be removed from first-level peer review and instead will be reviewed by NIH staff. The peer reviewers will only provide feedback on the criteria for authentication of key biological and/or chemical resources and budget and period of support; NIH staff will review applications from foreign organizations, select agent research, and resource sharing plan criteria.

Discussion (44:34)

During the presentation (timestamp 40:55), Dr. Cruz noted that grant applications are not changing, so the same level of detail is needed for the investigator and environment sections even though they are no longer being scored. Dr. Nitkin added that the simplified framework will help reviewers focus on the significance and potential impact of a project rather than the elegance of an approach. Highly innovative studies often are not funded, because reviewers are uncertain whether the studies are possible. This framework should also help increase the diversity of funded researchers, funded institutions (e.g., geographic diversity), and research ideas and will have important implications for training and career development (TCD).

A board member asked whether there will be an RFA focused on CVI research. Dr. Cruz said that NEI is creating a CVI registry in which the institute will own the data. NEI has experience in building similar registries, such as eyeGENE® (the National Ophthalmic Disease Genotyping and Phenotyping Network), which has data on genetic eye disorders. This work will involve NEI-appointed steering committees rather than RFAs.

Another board member asked about plans for training peer reviewers on this simplified review framework. Dr. Cruz said that some of the work needed ahead of the implementation of this new framework includes editing every notice of funding opportunity (NOFO) and having CSR-hosted training sessions. A CSR staff member could be invited to a future NABMRR meeting to discuss the implementation of this new review process.

Dr. Nitkin discussed with a board member how not scoring the investigator or environment criteria could reduce the preference for investigators at elite, higher-tiered institutions.

NICHD Director’s Updates (50:47)

Diana W. Bianchi, M.D., Director, NICHD

Dr. Bianchi shared updates about the new NIH Director, fiscal year (FY) 2024 appropriations, and NICHD’s interactions with congressional members. She also discussed the report from the Advisory Committee to the Director (ACD) Working Group on Diversity (WGD) Subgroup on Individuals with Disabilities, NICHD strategic planning, NICHD partnerships, and other NIH leadership updates.

New NIH Director (52:13)

Monica Bertagnolli, M.D., was sworn in on November 9, 2023, as the 17th NIH Director. She is a surgeon–oncologist who has held multiple leadership positions within the oncology community and most recently served as the director of the National Cancer Institute from October 2022 through November 2023. Dr. Bertagnolli has many new ideas, so it is exciting to be working with her as she begins to roll out her vision for NIH.

FY 2024 Appropriations and Congressional Interactions (53:51)

Despite two threats of a government shutdown, NIH is funded under a continuing resolution until February 2, 2024. The payline percentages for NICHD funding will remain low until an extended budget is passed. Dr. Bianchi acknowledged that the uncertainties around the budget and government shutdowns have been stressful for NICHD staff and investigators who are supported by or applying for funding.

Dr. Bianchi recently met with two members of Congress. Representative Yadira Caraveo, M.D., (D-CO) is a pediatrician and has a significant interest in child health. Senator John Boozman (R-AR) was interested in discussing his concerns about rising maternal mortality and specifically the challenges his state faces in caring for pregnant women.

ACD WGD Subgroup on Individuals with Disabilities (57:52)

The ACD WGD Subgroup on Individuals with Disabilities released its first report (PDF 1.2 MB) in December 2022. One suggestion for immediate action was to remove the language about reducing disability from NIH’s mission statement. The current mission statement says that one of NIH’s goals is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.” According to the subgroup’s report, “The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’”

In August, NIH released NOT-OD-23-163: Request for Information (RFI): Inviting Comments and Suggestions on Updating the NIH Mission Statement to collect comments on the proposed updates to the NIH mission statement. The proposed updated mission statement is, “to seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.” Responses to the RFI were due on November 24.

The ACD WGD Subgroup on Individuals with Disabilities received a 2023 NIH Director’s Award “for their leadership and comprehensive strategy document that advances the inclusion of individuals with disabilities in the scientific workforce.” Dr. Bianchi acknowledged the major contributions of Dr. Cruz and Kathleen Mann Koepke, Ph.D., from NICHD to this report as ex officio members of the subgroup.

In October 2023, NIH designated people with disabilities as a health disparities population. This designation supports NICHD’s mission area of including people with disabilities in research. Currently, NICHD and other ICs are supporting PAR-23-309: Health and Health Care Disparities Among Persons Living with Disabilities (R01 - Clinical Trials Optional) to address the intersecting impact of disability, race and ethnicity, and socioeconomic status on health care access and health outcomes.

NICHD Strategic Planning (1:02:00)

As required by the 21st Century Cures Act, each NIH IC must refresh its strategic plan every 5 years. NICHD is working to develop its 2025 strategic plan, which will cover scientific research, stewardship, management, and accountability. As part of its efforts to refresh the strategic plan, NICHD leadership will seek staff input on progress and potential new scientific opportunities and feedback from the scientific community, advocacy groups, and the public through RFIs. Also, NICHD is reviewing its progress by assessing its progress toward the 10 aspirational goals outlined in the NICHD Strategic Plan 2020. For each of the three goals most relevant to NCMRR, Dr. Bianchi reviewed the background, the amount of NICHD funding and number of projects toward the goal, and recent NICHD-funded studies that support the goal.

Relevant Aspirational Goal 1: Advance the ability to regenerate human limbs by using emerging technologies to activate the body’s own growth pathways and processes.

  • Background: Currently, 2.1 million people in the United States have limb loss, which can lead to pain and long-term disabilities. The average lifetime direct medical cost after limb amputation is $878,926.
  • Funding and Projects: Since 2020, there has been an upward trend in the number of projects and amount of funding supported by NICHD related to limb loss.
  • Findings:
    • A preclinical study using salamanders found that the patterns of gene expression between developing and regenerating limbs are similar (PMID: 35531102).
    • Another study showed that salamander limb regeneration requires building a blastema and that active inhibition of protein synthesis is key to supporting blastema formation and growth (PMID: 36893754).

Relevant Aspirational Goal 2: Enhance the survival and healthy development of preterm infants by exploring the role of environmental factors.

  • Background: About 10.5% of live births in the United States are preterm. Preterm births increase the risk for mortality and long-term disability. In 2021, approximately 9% of newborns were admitted the neonatal intensive care unit (NICU).
  • Funding and Projects: NICHD continues to fund the Neonatal Research Network and the Maternal-Fetal Medicine Units Network. The number of projects and amount of funding related to preterm birth has remained flat or even slightly decreased between 2020 and 2022.
  • Findings:
    • Extremely preterm infants who were fed fortified human milk grew longer and more rapidly than infants fed unfortified milk (PMID: 37551512).
    • Preterm infants who were exposed to speech sounds in the NICU gained significantly more weight (PMID: 36720260). There is evidence that steroid treatment before birth improves survival and reduces complications among extremely preterm infants (PMID: 36156145).

Relevant Aspirational Goal 3: Facilitate application of precision medicine approaches in children by capitalizing on advances in genomics and by updating normative data on the growth and development of a diverse population of children, including those with intellectual, developmental, and physical disabilities.

  • Background: Between 44% and 50% of rare disease intellectual disabilities, hearing disorders, and vision disorders have been diagnosed through genome sequencing with the U.K. 100,000 Genomes Project (PMID: 34758253).
  • Funding and Projects: NICHD funding and NICHD-funded projects in this area remained flat between 2020 and 2022.
  • Findings:
    • Despite flat funding, the knowledge being gained in this area is growing rapidly. Researchers developed a computer algorithm that uses electronic health records data to identify children who should be tested for rare genetic conditions (PMID: 35321655).
    • Genetic testing in the NICU has become part of routine care, and a recent study found that genetic testing of siblings of newborns with cancer-related genes could reduce rare pediatric cancer deaths (PMID: 34661666).
    • Genome-wide association studies identified genetic variants contributing to variations in dexmedetomidine and fentanyl clearance in children who have been exposed to these drugs in utero (PMID: 37353859).

Partnerships (1:10:23)

NICHD received the prestigious 2023 Charles A. Sanders, M.D., Partnership Award external link from the Foundation for the National Institutes of Health (FNIH) for NICHD’s collaboration on two maternal health clinical trials. The first was the A-PLUS Trial, which showed that giving a single dose of low-cost oral antibiotic azithromycin during labor can reduce maternal sepsis and death by about a third. This work, done in partnership between NICHD’s Global Network for Women’s and Children’s Health Research and the Bill & Melinda Gates Foundation (BMGF), was done at eight sites in seven low- or middle-income countries. Although the main clinical trial is complete, secondary analyses and sub-studies are ongoing. The second maternal health clinical trial, the Prevention of Iron Deficiency Anemia Post-Delivery (PRIORITY) trial external link, is attempting to reduce morbidity by giving intravenous iron to postpartum women treat anemia before they conceive again.

The FNIH supports public–private partnerships between foundations or industry and NIH ICs. For example, the BMGF cannot directly give money to NICHD, but the foundation can give money to the FNIH to partner with NICHD. NICHD’s other partnerships with the FNIH are focused on pediatric medical device development and biomarkers for risk stratification and detection of early-onset preeclampsia. NICHD is also exploring additional partnership opportunities with the FNIH to support maternal and child health care research.

NICHD has an ongoing collaboration with the BMGF through the Maternal, Neonatal, and Child Health Working Group, whose three subgroups supporting a variety of projects:

  • Pregnancy Outcomes Subgroup. Projects under this subgroup include the A-PLUS and PRIORITY trials; studies focused on therapeutics in pregnant people and children through projects using NICHD’s Maternal and Pediatric Precision in Therapeutic (MPRINT) Hub; studies using electromyometrial imaging to characterize contractions leading to premature delivery; and projects focused on COVID-19 antibody testing and vaccine hesitancy.
  • Neurodevelopment Subgroup. One of the main efforts under this subgroup is using Hyperfine’s Swoop® portable magnetic resonance imaging system to study child neurodevelopment and nutrition interventions. NICHD is funding an intramural study using Swoop to develop and test novel biomarkers that could be suitable for imaging applications in low- and middle-income countries and rural areas. Finally, the HEALthy Brain and Child Development Study is looking at the effects of opioid use on brain development from the perinatal period through early childhood.
  • Growth and Nutrition Subgroup. This subgroup’s work includes the Breastmilk Ecology: Genesis of Infant Nutrition (BEGIN) Project, the Nutrition Ecology of Early Development (NEED) project, the Assessing Determinants of Malnutrition and Implications for Treatment (ADMIT) Project, the Biomarkers of Nutrition for Development-Knowledge Indicating Dietary Sufficiency (BOND-KIDS) project, and projects focused on climate change’s impact on nutrition and anemia ecology.

In November, NICHD met with the chair and chief executive officer of Inserm, France’s equivalent to NIH. The meeting focused on overlapping priority areas in women’s health, including infertility and endometriosis. Inserm also has a national cohort study of 100,000 families to characterize the effects of the exposome on child health.

Other NIH Leadership Updates (1:17:50)

Dr. Bianchi noted the following new leaders and one retirement at NIH:

  • Jeanne Marrazzo, M.D., director of the National Institute of Allergy and Infectious Diseases
  • Jane Simoni, Ph.D., associate director for behavioral and social sciences research at NIH and director of the Office of Behavioral and Social Sciences Research
  • Karina Walter, Ph.D., M.S.W., director of the NIH Tribal Health Research Office
  • National Library of Medicine (NLM) Director Patricia Flatley Brennan, RN, Ph.D., recently retired after 7 years. Stephen Sherry, Ph.D., is currently serving as NLM acting director.

NICHD is hiring extramural branch chiefs, program officers, and extramural policy officers. The institute is also looking for talented postdoctoral fellows, fellows, and trainees for its intramural laboratories.

Discussion (1:22:10)

A board member asked about how NICHD collaborates with outside organizations like the BMGF and Inserm. Dr. Bianchi said that NICHD meets with these organizations and finds areas where their priorities overlap. For example, the BMGF and NICHD are interested in reducing maternal deaths caused by sepsis in low- and middle-income countries. The BMGF wanted to use the infrastructure of NICHD’s Global Network for Women’s and Children’s Health Research to support its research efforts. NICHD and the BMGF negotiated which group would support the different aspects of this research, and the FNIH acted as the broker.

The same board member suggested acknowledging global rehabilitation in the 2025 NICHD strategic plan. Dr. Bianchi agreed, saying that this idea aligned with NICHD’s priorities. Importantly, NCMRR is not exclusive to NICHD, so it could work with other institutes, such as NINDS, to focus on global rehabilitation. Dr. Cruz said that NCMRR has partnered with the Fogarty International Center and WHO in global rehabilitation research efforts and could potentially partner with the WHO Collaborating Centre for Rehabilitation at Emory University. Dr. Cruz agreed to share more information about these opportunities with the Board members.

Regarding the updates to the NIH mission statement, a board member said that there could be an issue with the phrase “optimize health and prevent or reduce illness,” because it could suggest optimizing a person’s physiology or that disability is an illness. The mission statement could say something about optimizing the ability to participate fully and productively in the world. Dr. Bianchi agreed, saying that she raised the same issue during an IC directors’ meeting about the mission statement. NICHD’s mission mentions the need to “optimize abilities for all.” It is unclear whether the proposed mission statement will be adopted as is, but the public’s feedback on the mission statement is still being reviewed.

Regarding the aspirational goal of exploring the role of environmental factors, a board member said that this was an opportunity to partner with other institutions to study the neuroexposome, bring interventions that mimic interactions an infant would have with their family into the NICU, and use AI and other technology. Dr. Bianchi agreed and said that NICHD is involved in efforts to examine typical and atypical environments caused by climate change and weather-related disasters. People of reproductive age, children, and people with disabilities are well represented in the NIH Climate Change and Health Initiative. It was through these types of efforts and NICHD staff speaking up that led to people with disabilities being designated a health disparities population, a milestone that should be celebrated.

Dr. Nitkin said that Dr. Bianchi’s update shows the breadth of NICHD’s portfolio and why NCMRR is functioning within NICHD. He appreciated seeing NCMRR’s role in NICHD’s aspirational goals and the broader implications of these goals. Dr. Bianchi agreed and said that NICHD and NCMRR are embedded in the overall fabric of NIH, unlike the more siloed ICs. She wanted the board to recognize how NICHD is embedded in several major NIH-wide initiatives and representing the institutes’ populations of interest (e.g., people with disabilities).

Updating the NIH Strategic Plan for Rehabilitation Research (1:36:14)

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

As Dr. Bianchi mentioned, the 21st Century Cures Act requires that NIH ICs create a strategic plan every 5 years. Since NCMRR is not an IC, it must create a research plan (not a strategic plan) every 5 years. The 2016 NIH Research Plan on Rehabilitation (PDF 443 KB) was the first rehabilitation research plan since 1993, so it was viewed as a fresh start for NIH and NCMRR. The research plan had six themes: rehabilitation across the lifespan, community and family, technology use and development, research design and methodology, translational science, and building research capacity and infrastructure.

The 2021 NIH Research Plan on Rehabilitation (PDF 1.51 MB) maintained the original six themes but highlighted some changes, including being more action-oriented, being more inclusive of people with disabilities and their preferences, expanding the targeted lifespan to include infancy, promoting open-source data sharing, and committing to individual training awards that support a self-sustaining research field. The overall sentiment shared about this research plan was that it was only as useful as the community made it.

Dr. Cruz shared the following data about NIH’s rehabilitation research portfolio:

  • The NIH extramural rehabilitation portfolio has steadily increased between 2015 and 2022, with a 46% increase for funding and a 44% increase in the number of funded grants. Most of this funding (81%) goes to research project grants. Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) grants make up 8% of this rehabilitation research funding; in comparison, 3% of NIH funding supports SBIR/STTR grants. The major funders of rehabilitation research at NIH are NINDS, NIA, and the National Institute on Deafness and Other Communication Disorders (NIDCD).
  • NCMRR tracks the number of NIH-funded projects and the amount of NIH funding related to the six rehabilitation research plan themes over time. Community and family has the lowest investment, and research design and methodology has the highest. There is strong representation of projects focused on technology use and development and translational science.
  • Using the NIH tool iCite, NCMRR calculated the relative citation ratio (RCR) for NIH-funded rehabilitation publications in 2022. The RCR measures the scientific influence of each paper by field- and time-adjusting the publications’ citations. The median RCR for NIH-funded rehabilitation publications is 1.8, compared with the benchmark median RCR for all publications, which is 1.0. This suggests that NIH-funded rehabilitation research publications are more impactful than the broader array of NIH research papers.
  • The number of rehabilitation research publications grew between 2015 and 2022. The number of patents associated with NIH-funded rehabilitation research grants has been steadily high between 2015 and 2022, and the number of patents in AI rehabilitation associated with NIH-funded rehabilitation research grants has significantly increased since 2020.

Dr. Cruz reviewed NIH activities and noteworthy scientific advances that were associated with each theme from the NIH Research Plan for Rehabilitation:

  • Rehabilitation Across the Lifespan
    • NIH activities 
      • NIA: RFA-AG-18-016: Tailoring Cardiac Rehabilitation to Enhance Participation of Older Adults (R01)
      • NCMRR: RFA-HD-20-005: Research Project Grants in Pediatric Rehabilitation (R01 Clinical Trial Optional)
      • Collaboration between the American Association on Health and Disability and the All of Us Research Program to support enrolling more people with disabilities in All of Us
    • Scientific advances
      • Constraint-Induced Movement Therapy for Cerebral Palsy: A Randomized Trial (PMID: 34649982): Results from the Children with Hemiparesis Arm and Hand Movement Project (CHAMP)
      • Optimal Intensity and Duration of Walking Rehabilitation in Patients With Chronic Stroke: A Randomized Clinical Trial (PMID: 36822187): High-intensity interval training dosing study
      • Critical Period After Stroke Study (CPASS): A phase II clinical trial testing an optimal time for motor recovery after stroke in humans  (PMID: 34544853)
  • Community and Family
    • NIH activities
      • National Heart, Lung, and Blood Institute (NHLBI): RFA-HL-18-019:  Increasing Use of Cardiovascular and Pulmonary Rehabilitation in Traditional and Community Settings (R61/R33)
      • NCMRR: RFA-HD-22-017: Home and Community-Based Physical Activity Interventions to Improve the Health of Wheelchair Users (R01 Clinical Trial Required)
      • NCMRR: NOFO about incorporating lived experience in research plans; and, most importantly, the designation of people with disabilities as a health disparities population.
    • Scientific advances
      • ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities (PMID: 36190896): A recent study surveyed physicians about their knowledge of the Americans with Disabilities Act, what accommodations they provide to their patients, and their attitudes about having patients with disabilities
      • Determinants of Inequities in Neurologic Disease, Health, and Well-being: The NINDS Social Determinants of Health Framework (PMID: 37580154)
      • Better Mobility Is Associated With Higher Incomes and Longer Working Years Among Older Adults (PMID: 37878467): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)-published study that showed a linkage between mobility, income, and working years
  • Technology Use and Development
  • Research Design and Methodology
  • Translational Research (updated from Translational Science)
  • Research Capacity and Infrastructure

Many changes have occurred at NIH since NCMRR released its 2016 research plan, including the designation of people with disabilities as a health disparities population, the revision of the NIH mission statement, conversations around health equity and ableism, and the COVID-19 pandemic, which has led to disabilities associated with Long COVID. With all this in mind, it is apparent that the research plan needs new themes.

The timeline for updating the research plan begins with an RFI to be released in early 2024. NIH and NCMRR staff will review this feedback and draft themes, which will be presented to the NABMRR in December 2024. The NIH Rehabilitation Research conference will be held in February 2025 and collect additional feedback, then the research plan working group will begin meeting to discuss and draft the research plan. An update will be presented to the NABMRR in May 2025, followed by another RFI and additional outreach for feedback from the community. Final updates and input will occur at the December 2025 NABMRR meeting, then the research plan will be submitted to NIH for clearance and approval.

NABMRR members can volunteer to participate in one of two working groups. The conference planning working group will provide advice on scientific topics and logistics and will meet between June 2024 and January 2025. The research plan working group will provide feedback on the plan’s scientific themes and will meet between January and November 2025. Dr. Cruz will follow up with NABMRR members about their interest in participating in either working group.

Discussion (2:12:15)

Dr. Cruz discussed with a board member how the initial RFI about the new research plan themes should ask respondents for their feedback on which themes should still be used and any new themes that should be added.

Several board members emphasized the importance of including specific groups and communities in the discussions about the research plan. One member suggested including the American Public Health Association and other public health experts. Another member suggested hosting several local conferences to solicit feedback from various stakeholders. Another member said that there should be targeted engagement of leaders or representatives from well-known community advocacy groups like United Spinal Association and United Cerebral Palsy, because their lived experience could enhance the research plan. Another board member said that implementation scientists could provide insights into how to get evidence-based interventions into practice. Another member volunteered to assist with finding subject matter experts who should be included in discussions around the research plan.

Board members made suggestions about the following topics that should be included in the research plan:

  • Implanted brain–computer interfaces
  • Changing behaviors to promote long-term uptake of interventions, which can help rehabilitation research address modifiable factors, such as social determinants of health
  • The relationship between learning mechanisms and response to rehabilitation
  • Clinical trial design and ways to design studies creatively and collaboratively with limited funding
  • Ways to translate or generalize interventions from the clinic to the community, a major, persistent problem in the field
  • The intersection of infectious disease (e.g., HIV, COVID-19) and rehabilitation

A board member suggested that the rehabilitation conference could include health disparities experts to acknowledge the milestone of health disparities population designation and to explore synergies between the rehabilitation and health disparities communities.

Another board member said that although NINDS is the largest funder of rehabilitation research, it looks to NCMRR as the leader in this field. They expressed their excitement to hear the board members’ suggestions about implementation and behavioral interventions. Despite the importance of these issues, they can be difficult for institutes like NINDS to address; however, NCMRR can lead the way in these efforts.

Report from NABMRR Training and Career Development (TCD) Working Group (2:29:45)

Michelle J. Johnson, Ph.D.

Dr. Johnson said that during the previous NABMRR meeting, the board discussed NCMRR’s commitment to supporting TCD. There were indications that NCMRR may be overfunding TCD efforts. Recent landscape changes, including the sunset of four institutional K12 programs, an overall shortage of available postdoctoral fellows, and a growing labor movement to change compensation and work expectations for graduate students and postdoctoral fellows, affected NCMRR’s commitment to TCD. As a result, an all-time low of 7% of the NCMRR budget was used to support TCD in FY 2022.

In May 2023, the NCMRR director and deputy director created a subgroup of the NABMRR to review this issue. Dr. Johnson shared the notable findings from the working group’s efforts:

  • NCMRR is the leader and major funder of rehabilitation TCD awards at NIH. From 1992 to 2022, 25% of all awards by NCMRR were TCD mechanisms, for an average of 15% of its total budget. In comparison, 6% of NIH’s rehabilitation research portfolio was spent on TCD grants.
  • Applications for NCMRR T32s have dropped significantly in the past 10 years, while individual fellowship applications have increased; however, very few K99 applications are submitted to or funded by NCMRR.
  • NCMRR’s funding of T32 and F awards has been consistent at $2 million to $3 million per year. Funding for career development K awards fluctuated significantly between $3 million and $8 million in the past 10 years. In 2022, NCMRR’s support for individual K awards did not offset the amount previously spent on the K12 network programs.
  • NCMRR K awardees who received both K12 support and individual K awards were more likely to get an R01 within 10 years than either group alone.

Based on these findings, the working group offered the following recommendations:

  • NCMRR should continue to lead rehabilitation TCD at NIH and programmatically raise the proportion of funding to training and career development mechanisms above the NIH average of 5%. Although NCMRR no longer needs to spend more than 10% of its budget on TCD, the goal should be that between 8% and 10% of NCMRR’s budget supports F, K, and T32 award mechanisms.
  • The NABMRR should receive regular updates about the rehabilitation TCD programs supported by NCMRR and NIH. The NABMRR is particularly interested in learning about trends over time and successful careers in nontraditional research pathways.
  • NCMRR staff should increase equitable outreach to inform trainees and mentors of resources available to increase both the number and quality of TCD applications.
  • NCMRR should reinstate the K12 programs, consistent with NICHD’s support of other clinician scientists. The cohorts created by the K12 are crucial to sustained growth of the field.
  • Only 3% of all NIH diversity supplements are awarded to people with disabilities. NCMRR should advertise and promote diversity supplements to support trainees with disabilities in rehabilitation research.
  • NCMRR should work with the Office of Health Equity at NICHD to increase TCD support to minoritized populations (e.g., racial and ethnic minorities, sexual and gender minorities, people with disabilities). Diverse perspectives and talent are needed to address the mission of NCMRR.

Discussion (2:46:48)

The board discussed the working group’s suggestion to have NCMRR use between 8% and 10% of its budget to support TCD awards. NABMRR members agreed that NCMRR can still be the leader of TCD in rehabilitation research but does not need to be the major funder. Other NIH ICs and agencies should also support the rehabilitation research workforce. The working group recognizes that the number of awardees and amount of funding for each TCD award will fluctuate over time, but NCMRR should commit to spending on TCD awards a percentage of its budget that is above NIH’s average percentage for TCD awards.

A board member said that other ICs, such as NINDS, have had more success than NCMRR with K99/R00 awards and could focus efforts on support of rehabilitation researchers. Dr. Johnson agreed, saying that NCMRR could increase awareness about K99/R00 funding for rehabilitation researchers. Another board member said that NIH and NCMRR could make more efforts to ensure K99/R00 awardees come from diverse backgrounds and from smaller, diverse institutions (e.g., historically Black colleges and universities). Dr. Nitkin agreed and said that one issue is that NIH grant reviewers like to fund K99/R00 awardees with mentors who have research grants and institutional connections, which can work against researchers who are not at elite institutions.

Dr. Johnson noted that the K12 networks were responsible for many awardees becoming independent investigators with R01 funding. A board member shared the working group’s discussion about the importance of geographic and institutional diversity in funding TCD awards and how NIH and NCMRR could explore ways to facilitate TCD awards, such as K12 network support, at more diverse institutions.

The NABMRR voted to approve the working group’s recommendations pending a revision to Recommendation 1, which should not have a set percentage but should say that NCMRR should commit to staying above the NIH average for TCD funding.

Based on the discussion, Dr. Cruz agreed to share specific implementation plans for Recommendation 6, including input NICHD’s Office of Health Equity, with the NABMRR at a future meeting.

Including Persons with the Lived Experience in Research and Knowledge Translation (3:04:11)

James Sulzer, Ph.D., Staff Scientist, Department of Physical Medicine and Rehabilitation, MetroHealth System, Cleveland; and Associate Professor, Department of Physical Medicine and Rehabilitation, Case Western Reserve University

Dr. Sulzer is an engineer and rehabilitation researcher whose research focuses on improving walking after stroke. He shared a story about his young daughter, who experienced a traumatic brain injury (TBI) after a tree limb fell on her. Despite his and his wife’s scientific backgrounds, it was difficult to make medical decisions for their daughter. Scientists and clinicians often rely on statistically significant data or evidence of what treatments worked best for their patients. Parents of children with medical conditions or disabilities are eager to try any treatment that could possibly benefit their child.

Dr. Sulzer shared how this experience has affected his work as a rehabilitation researcher. He summarized these lessons in a recent paper (PMID: 33827612), but the experience made him think about whether a therapy could use simpler technology, address multiple impairments, and be integrated in daily life. This also demonstrates how lived experience is a qualification, and the input of the people with those experiences should be valued as much as input from a top scientist or clinician. Several studies (including PMIDs 34545013 and 33587827) have shown that including people with lived experience improved the research process by bringing new ideas, improving recruitment, and leading to better outcomes and decision making. Including people with lived experience also builds trust among the end users of a treatment or therapy; there is evidence that people making medical decisions trust personal recommendations and suggestions from other parents more than clinician recommendations or scientific evidence.

The fundamental inclusion principles that NIH should adopt are valuing lived experience as an expertise, prioritizing edge cases by embracing complexity, having accountability and shared leadership, establishing reciprocal relationships, promoting co-learning where researchers spend time with people with lived experience and researchers can teach them about the scientific process, and developing active partnerships that are based on mutual respect. NIH can create an infrastructure where people with lived experience can be involved in conference planning, research studies, scientific reviews, and funding agencies. They can also hold senior positions within ICs. NIH should also make efforts to share objective, unbiased information with people to empower them in their medical decision making.

Discussion (3:47:37)

Many board members expressed their gratitude to Dr. Sulzer for sharing his story and speaking candidly about how rehabilitation research can leverage the valuable viewpoints of people with lived experience.

One board member asked how to get people with lived experience involved in research study design, especially for therapies that have been understudied or have anecdotal evidence of providing benefits. Dr. Sulzer said that there are family engagement research groups and organizations like CanChild. Also, paying people for their time and contributions can help get them involved in the research process.

Dr. Sulzer discussed with another board member ways for researchers to share their knowledge with families in accessible ways (e.g., the Turnto app). Scientists need to find reliable papers and share high-level, plain language summaries with families to inform their medical decisions. There are few avenues for scientists to directly communicate with the disability community, so apps like Turnto are invaluable. It is also difficult to fund these types of apps and communications channels, so organizations like NIH could fund them. Dr. Nitkin said that NIH has funded small programs through R25 grants where engineers meet with people with disabilities to learn more about their experiences to help develop more practical solutions to their day-to-day needs.

A board member asked about including people with lived experience in the peer review process. Dr. Cruz said peer reviewers do not disclose their disability status, but NCMRR has advocated for doing so and for having inclusion plans in RFAs. There are NIH-wide efforts to underway address this that will be shared with the NABMRR later in the meeting.

A board member noted Dr. Sulzer’s point about how resource fairs are essentially industry-driven, promotional events. NIH could host events like the Cybathlon competition, where researchers work with people with disabilities to develop assistive technologies and showcase these devices without the conflict of interest. Dr. Sulzer agreed, but he noted that although getting technologies to families is important, the main concern is empowering families with information and giving them baseline knowledge about how to help their children with disabilities.

Another board member asked how NIH can leverage AI to help share information with families. Although skeptical about using AI for sharing scientific research, Dr. Sulzer said that there is no central database of rehabilitation technologies or therapies for various conditions and disabilities. People have tried to develop and maintain such resources, but AI might help with this type of database.

A board member said that the National Multiple Sclerosis Society has tried to embrace including people with lived experience by having them involved in grant reviews. Scientists teach them some science to help them with their review, but these reviewers provide feedback on patient-centered concerns about the research and whether the research is relevant for their needs. The participants feel valued for having their perspective taken into consideration. Dr. Sulzer said that groups at the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the Patient-Centered Outcomes Research Institutes also include people with lived experience in their grant reviews.

2023 MR3 Network Scientific Retreat: Moving from Potential to Real Impact: Engaging with a Broader Community to Improve Translation of Rehabilitation Research Innovations (4:08:06)

Rick Segal, PT, Ph.D., National Coordinating Center Lead, MR3 Network 

Amy Darragh, Ph.D., OTR/L, National Pediatric Rehabilitation Resource Center, MR3 Network

Dr. Segal shared an overview of the third annual scientific retreat external link held by the MR3 Network external link. The theme of this annual retreat was chosen to address the need to include and engage people who need rehabilitation in the development and implementation of rehabilitation research, which can lead to better translation of research. The retreat had nine sessions and two keynote lectures. The speakers for the retreat represented 21 institutions and 6 funding agencies. Dr. Segal provided an overview of the retreat’s agenda and said that recordings of all sessions are available on the retreat website. Session topics included clinical research partnership, patient and community engagement, industry partnerships, advisory boards, design thinking, and learning health systems.

Dr. Darragh shared details about family advisory councils, which were a topic of discussion at the retreat. Family advisory councils serve as research partners and provide guidance and feedback on various aspects of trials, including design, recruitment, consent, enrollment, outcome measurements, protocol and protocol changes, digital communications, and dissemination of study results. The councils are a valued resource for the research team, study participants and their families, and their communities, including advocacy groups. There are several important principles about including family advisory councils in a study:

  • Researchers need to consider the role of a family advisory board at the beginning of the grant writing process. Roles could include developing recruitment materials, communicating with trial participants, making scientific decisions before and/or after a study is launched, and administering surveys or interviews to learn about participants’ experience with the trial.
  • Family advisory council members should be paid for their efforts. A budget for this compensation should include travel costs to study meetings, conferences to disseminate their work, and other in-person meetings.
  • Communication is key. Advisory board members can educate researchers about their lived experiences to improve the study’s quality. Researchers can provide expertise on scientific and regulatory terms and processes (e.g., institutional review board [IRB], informed consent, bias).

Dr. Darragh shared the example of the I-ACQUIRE Parent Council that serves the I-ACQUIRE study external link, an ongoing trial focused on infants with perinatal arterial ischemic stroke that is part of NIH StrokeNet external link. The I-ACQUIRE Parent Council provides input on recruitment and has worked with the study’s therapists and assessors and developed resources for families of study participants. The council’s members serve on the I-ACQUIRE executive steering and publications committees and have presented alongside study researchers at conferences and meetings.

Discussion (4:35:20)

Dr. Segal shared that the poster session at the American Congress of Rehabilitation Medicine meeting was attended by research participants, their caretakers, and their families. They could see the progress of studies they contributed to and of the field. The meeting attendees were thrilled to have that type of engagement with the research participants.

Dr. Darragh and a board member explained that I-ACQUIRE Parent Council members are paid an annual stipend through a multi-institution trial budget. They also receive reimbursements for conferences, travel, and other related expenses. They are not hired as employees.

A board member asked about best practices for involving and retaining people with lived experience on advisory councils. Dr. Darragh said that one of the most effective strategies is having regular, consistent meeting times. Also, the I-ACQUIRE Parent Council chairs attended the investigator kickoff meeting for the trial and gave presentations about their role in the study. In response to another question from the board member, Dr. Darragh said that the council co-chairs were involved early in the grant writing process, but other members were recruited through the other MR3 Network sites through word of mouth. MR3 Network staff were not involved in finding council members and instead acted as consultants.

Department of Veterans Affairs (VA) Support for Rehabilitation Research (4:44:00)

Patricia Dorn, Ph.D., Director, VA Rehabilitation Research and Development Service (RR&D)

Dr. Dorn presented an overview of the VA and research under Office of Research and Development, including the VA’s RR&D program, which supports studies to advance scientific knowledge and foster innovations to maximize veterans’ functional independence, quality of life, and participation in their lives and community. Dr. Dorn recognized the RR&D staff and the various programs areas with RR&D, including musculoskeletal health and function; rehabilitation engineering, prosthetics, and orthotics; chronic medical conditions and aging; behavioral health and social regeneration; sensory systems and communication disorders; spinal cord injury (SCI) or disorder, pain, and regeneration; brain health and injury; TBI; and career development. A few of RR&D’s current research priorities include understanding health disparities, suicide prevention, the impact of COVID-19, and the effects of opioid use on TBI. Importantly, VA and RR&D support only intramural research. The principal investigator must have at least a five-eighths faculty appointment with the VA when funded, but that can be administratively negotiated after application if the research proposal is successful.

Dr. Dorn highlighted many RR&D-funded research projects that range from prosthetics, assistive technologies and devices, and diagnosis and treatment support tools.

Discussion (5:27:22)

A board member asked about the overlap between NIH-funded and VA-funded researchers. Dr. Dorn said that investigators should go to the right funder based on their appropriations and the purpose of their research. The VA funds veteran-centric research. A researcher would need to join a VA center to receive VA funding. Dr. Nitkin added that VA-funded research is tracked on the NIH RePORTER, so people can see the scope of their work and compare it with the scope of NIH-funded research. Also, anyone with a VA grant is considered a government employee and cannot serve on the NABMRR.

NIH Response to the Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities (5:30:07)

Alison Cernich, Ph.D., Deputy Director, NICHD

Dr. Cernich said that people with disabilities are often excluded from research. This exclusion is due to ableism, the medical model of disability (i.e., disability is an illness or disease), the cost and complexity of accommodations for disabled people, and data assumptions (e.g., people with disability introduce heterogeneous characteristics that make the data “messy”). There are also issues with inclusion of people with disabilities in the research workforce; only approximately 1.2% of NIH-funded investigators and 3% of diversity supplement recipients report a disability. Disabled people in the research workforce often have lower salary levels than those without a disability and are underrepresented at higher faculty ranks.

The ACD WGD Subgroup on Individuals with Disabilities provided a roadmap for NIH to address ableism and ensure disability inclusion. The recommendations include updating the NIH mission statement, establishing a NIH Disability Equity and Access Coordinating Committee, developing an NIH-wide effort to identify and address any structural ableism that may exist and promote disability inclusion, ensuring that disability inclusion and anti-ableism are core components of all NIH DEIA efforts, and maintaining accountability for disability inclusion efforts. As a result of this report, NIH has already taken some actions:

  • As mentioned earlier, NIH released an RFA to solicit feedback on changes to the NIH mission statement and designated people with disabilities as a population with health disparities.
  • In conjunction with this health disparities designation, PAR-23-309: Health and Health Care Disparities Among Persons Living with Disabilities (R01 - Clinical Trials Optional) was posted to support research that focuses on the intersection between disability, race and ethnicity, and socioeconomic status was posted. There are multiple application receipt dates, and the first deadline is February 5, 2024.
  • NICHD and NCMRR hosted the Ableism in Medicine and Clinical Research Workshop on April 27 and April 28, 2023. The workshop’s goal was to raise awareness of ableism in both clinical care and biomedical and behavioral research enterprise and to identify research opportunities to mitigate the effects of ableism.
  • In conjunction with the workshop, NICHD, NEI, and NIBIB released RFA-HD-24-007: Understanding and Mitigating Health Disparities experienced by People with Disabilities caused by Ableism (R01 Clinical Trial Optional) to encourage research to understand how ableism contributes to health disparities for people with disabilities and/or to develop systems-level intervention to combat the negative health impacts of ableism. The application deadline was on November 29, 2023.

Simultaneous to the subgroup’s efforts, NIH developed the NIH-Wide Strategic Plan for Diversity, Equity, Inclusion, and Accessibility (DEIA), which commits to promoting inclusion and addressing ableism in NIH’s training, communication, policies, and structures to ensure that anti-ableism is a core component of all NIH’s DEIA efforts. To implement these commitments, the Steering Committee DEIA Working Group created a subcommittee to review the culture, ableism, and research policies and systems at NIH. This subcommittee is led by Dr. Cernich; Kevin Williams, Esq., the director of the Office of Equity, Diversity, and Inclusion; and Ellen Rolfes, M.A., the executive officer of the National Human Genome Research Institute (NHGRI). Tasks for this subgroup include the following:

  • Leading outreach and engagement with disability groups internal and external to NIH
  • Reviewing NIH policies and procedures for ableist language
  • Identifying workforce training opportunities
  • Reviewing NIH’s compliance with the Americans with Disabilities Act and the Rehabilitation Act
  • Consulting with NIH offices leading accessibility efforts
  • Building resources for ICs to promote inclusive practices in scientific research and hiring and retention of staff to support research

Discussion (5:57:55)

Several board members expressed their excitement about NIH’s efforts to commit to supporting people with disabilities and combatting ableism.

One board member shared an experience with members of the disability community expressing concern about people not being used to seeing disabled people in the science workforce and asked how NIH hopes to encourage more people with disabilities to be a part of the scientific workforce. Dr. Cernich said that one important step is educating people to dispel ableist viewpoints and have scientists with disabilities to be seen as just scientists. This will require a lot of groups, such as the Association of University Centers on Disability, the American Association of People with Disabilities, and the American Association on Health and Disability, to collaborate and work together. These groups have thought about these issues for many years and will be invaluable resources. Dr. Cernich said that NABMRR members can share specific organizations that would be helpful with these efforts. The board member suggested leveraging vocational rehabilitation and state rehabilitation groups.

Another board member said that NIH should speak to scientists with disabilities to understand how they overcame certain barriers and use them as spokespeople to promote representation of people with disabilities in the sciences. NIH can also take lessons learned from supporting other populations, such as racial and ethnic minorities, and apply them to the disability community. Dr. Cernich agreed that representation matters. Whether NIH convenes a workshop or creates a campaign, the task needs to do so with respect toward the people who participate and for the fact that they are scientists first and foremost. It is also important to consider the intersectional identities of people with disabilities (e.g., they may also be racial and ethnic minorities, or are poor, or out in rural environments).

Another board member remarked on how much time and work it took to have women in leadership roles in the scientific workforce. Although there is still work to do, the change in women’s roles shows that cultural change is possible. Dr. Cernich agreed, saying that when she was NCMRR director, there were 3 female IC directors at NIH; now there are 12, and the NIH Director is a woman. This shift requires strong, long-term institutional commitment.

A board member asked about transient disabilities, such as pregnancy. Dr. Cernich agreed that disabilities can be temporary, transient, or even invisible. And this might be on top of broader maternal health issues. NICHD is especially interested in supporting and destigmatizing disabled people who are pregnant and supporting people who are disabled because of pregnancy.

Another board member said that to encourage people with disabilities to join the scientific workforce, NIH may need to think about creating or changing funding opportunities. For example, NIH funding for graduate students is available only to students who are enrolled only in a graduate program, whereas the National Science Foundation’s Graduate Research Fellowship program allows perspective graduate students to apply for funding before they enroll in a graduate program. This has been a tremendously effective tool for promoting diversity. Dr. Cernich agreed and said that this idea can be raised as part of discussions around NICHD funding mechanism.

Recess (6:18:43)

Dr. Bregman thanked the presenters and NABMRR members for a most engaging day. The public portion of the meeting ended for the day at 5:06 p.m.

 

Day 2: December 5, 2023

The VideoCast recording of the second day of the December 2023 NABMRR meeting is available online.

Welcome (0:04)

The public meeting resumed at 9:02 a.m. Dr. Cruz welcomed everyone and thanked them for a great first day.

Consolidating Insights from Studying Brain Injury to Transform Clinical Outcomes (2:54)

Flora Hamond, M.D., FAAPMR, FACRM, Professor and Chair of Physical Medicine and Rehabilitation, Indiana University School of Medicine

Dr. Hammond said that in recent years, the medical and scientific community recognized that TBI is a chronic and dynamic condition. To treat TBI as a chronic condition, there needs to be an established chronic disease management approach that can help optimize outcomes.

In 2020, Dr. Hammond and her team received funding from NIDILRR to develop BeHEALTHY, a chronic disease model for TBI external link. The proposal for the model was to start with a chronic care model, add a patient-centered approach, and use a multidisciplinary program structure to deliver care to TBI patients. This model also requires risk stratification to determine the right intensity of interventions for different patients. The intensity of interventions will be based on medical complexity and on patients’ ability to self-manage, access to community resources, and social determinants of health. The team is still determining how to fund this program, because a fee-for-service approach will not cover all the required services.

Overall, the vision for BeHEALTHY is to have optimally informed and activated participants served by an expert, proactive team. The core principles are to have prepared, proactive providers; informed, activated, and supported people with TBI and their caregivers; activated communities and prepared, proactive community partners; and a person-centered, culturally humble approach. The nine core components of BeHEALTHY are to:

  • Educate and support (e.g., support groups, patient self-management)
  • Identify and treat hazards (e.g., stress management, substance use)
  • Reduce potential iatrogenic harm (e.g., reduce or avoid medications that hinder recovery or function)
  • Prescribe appropriate treatments (e.g., vocational rehabilitation, assistive devices)
  • Facilitate social and intellectual engagement (e.g., engagement in valued activities)
  • Encourage healthy brain behaviors (e.g., sleep, nutrition)
  • Review for comorbid health conditions and medications (e.g., screen for known comorbid health conditions associated with TBI and work in concert with a primary care physician)
  • Facilitate communication (e.g., between providers and between providers and patients)
  • Evaluate community barriers and opportunities (e.g., screen for social determinants of health and facilitate connections with community supports)

The next steps for BeHEALTHY are to conduct feasibility studies and plan for implementation and sustainability. There are currently 13 feasibility studies underway that are focused on clinical care, self-management, program structure, and community partnerships. The implementation plans include expanding and refining the BeHEALTHY model based on feasibility studies and potentially creating a pragmatic clinical trial proposal.

Discussion (39:51)

Dr. Hammond discussed with a board member how music and dance could be included in BeHEALTHY, because they are known to have brain health benefits and promote movement, exercise, and social engagement.

Dr. Cruz asked about the meaning of the term activated as used in the vision and core principles. Dr. Hammond said that activated professionals are meant to be aware of the field’s current understanding of TBI, so they are ready to identify and treat the various aspects of TBI. Activation for participants means their ability to self-manage, feel empowered to work with their care team, and feel ready to make changes.

In response to Dr. Nitkin’s question, Dr. Hammond said that clinicians cannot predict the trajectory and outcomes of different people with TBI. The major issue is that people with TBI are not provided proper information; they may not see a clinician for many months or may be given a prognosis without any detailed information. People with TBI need to have access to follow-up care and be able to recognize when they need to seek help.

Two board members noted that schools and colleges should be included as community partners, especially since TBI influences learning. Dr. Hammond appreciated the suggestion and said that the team recognizes the importance of having partners in people’s communities and finding partners that can address these issues.

Another board member asked about the influence of regulators and how they may provide insurance coverage for this program so that caregivers could make a living supporting these participants. Dr. Hammond said that the program is in the very early stages, but she agreed that funding for caregivers is an important piece. The board member added that caregivers should be involved early in these discussions, so they are part of the process.

A board member suggested sharing this model in a publication, especially because this is a new way of thinking that is visionary and could benefit a variety of research and clinical fields. Another board member added that the principles in this model are widely applicable and could be adopted by other disciplines (e.g., SCI, stroke, multiple sclerosis, mental health). Dr. Hammond agreed, saying that there should be ways to navigate illness, injury, and disability overall rather than for specific conditions. Efforts are needed to move the medical system and community together.

Given that this project is funded by NIDILRR, Dr. Nitkin asked about potential connections between NIH and NIDILRR. Dr. Hammond said that this work was informed by model systems work and funding for this project supports 17 sites. NIH has also collaborated with the model system sites to learn about types of care that lead to better outcomes for patients, so NIH and NIDILRR could continue to collaborate on these types of projects.

Research on Musculoskeletal Injury Rehabilitation (56:24)

Dr. Nitkin said that NABMRR members asked to hear more about research related to musculoskeletal injury, because NCMRR tends to focus on neurorehabilitation.

Military and VA–Funded Research (59:21)

Stephen M. Goldman, Ph.D., Assistant Professor of Surgery, Uniformed Services University; and Senior Scientist, Department of Defense and VA Extremity Trauma and Amputation Center of Excellence (EACE)

Dr. Goldman said that in the most recent military conflicts, case fatalities have decreased, but injury severity and injuries affecting the extremities have increased. EACE research encompasses the full spectrum of care for patients with amputation, limb reconstruction, and other complex extremity trauma. Dr. Goldman shared current research related to amputation, limb salvage, and volumetric muscle loss (VML).

EACE has developed several recent advances in surgical techniques for limb loss patients. Osseointegration, or directly adding the prosthetic to the skeleton, allows for increased mobility for the person with the prosthetic. Targeted muscle innervation and regenerative peripheral nerve interfaces are complementary approaches that were developed for myoelectric prostheses but were also found to treat neuroma. Vascularized composite allografts involve taking cadaver limbs, transplanting them onto the patient, and being able to restore function.

Limb salvage is another response to extremity trauma that is done for bony and soft-tissue loss with intact sensibility. EACE analyzed secondary outcomes among patients with primary amputation (PA), limb salvage with no amputation (LS-NA), and limb salvage with secondary amputation (LS-SA). Nonspecific pain is more common in PA than in LS patients. LS-SA patients are more likely to experience osteoarthritis (OA) and noncombat musculoskeletal injuries than PA patients are. Both PA and LS-SA patients have a similar prevalence of mental health disorders.

Volumetric muscle loss is the traumatic or surgical loss of skeletal muscle that results in chronic, functional deficits. There are limited clinically available treatment options, and rehabilitation is challenged by fibrotic healing outcomes. A recent systematic review and meta-analysis found that VML treatments consisting of acellular biomaterial combined with progenitor cells are the most effective, but the effect is about a 16% improvement(PMID: 31578930). Other studies show that rehabilitation interventions directly benefit VML regenerative therapies. The challenge is to be able to stabilize and begin to treat injury causing VML quickly on the battlefield using lightweight, easy-to-use treatments. A recent study from EACE demonstrated that in situ muscle void filter injections can stabilize the wound for four weeks in an animal model (PMID: 37736246.

Discussion (1:27:30)

Goldman responded to a board member question by explaining that the PA, LS-NA, and LS-SA analysis was done for amputation and limb salvage of lower extremities.

A board member asked about the function of the muscle after regeneration and whether motor end plates and neuromuscular junctions are being examined. Dr. Goldman said that this field is very new. Although regenerated muscle is mostly functional, issues with this process include the amount of muscle that is regenerated, the efficiency of reinnervation, fibrosis, loss of architecture, and suboptimal alignment of muscle fibers. It is a multifactorial problem that is being studied in a variety of ways.

Another board member asked about ways the military and VA systems can collaborate with academic researchers who are studying limb amputations and neurorehabilitation. Dr. Goldman said that there are challenges with collaboration, but the U.S. Department of Defense and NIH can work to provide platforms for researchers to meet and invite speakers to participate on interdisciplinary panels at events.

Dr. Goldman discussed with a board member the limitations of what medics can carry on the battlefield to treat injuries, so researchers need to be thoughtful about interventions and how they can be used in the field.

Sports Injuries (1:37:49)

Riann Palmieri-Smith, Ph.D., Professor of Athletic Training and director of the Orthopedic Rehabilitation and Biomechanics Laboratory University of Michigan

Dr. Palmieri-Smith said that participating in sports provides many health benefits, but it does increase the risk of injury. More than 8.5 million sports injuries occur in children under age 19 each year. Dr. Palmieri-Smith provided an overview about ankle sprains, anterior cruciate ligament (ACL) injuries, and shoulder instabilities.

Ankle sprains have the highest rate of recurrence of any musculoskeletal injury. Acute ankle sprains can lead to chronic ankle instability and eventually post-traumatic OA. Chronic ankle instability can be caused by functional instability due to increased looseness in the joint and arthrokinematics insufficiencies and functional instability due to patient perception of instability.

The ACL is the most injured knee ligament. Many patients have inadequate recovery, leading them to return to their sport too soon, which can cause long-term complications. Many people with ACL injuries will experience recurrence of injury and OA 10 years after injury. Rehabilitation of an ACL injury is effective at restoring mechanical stability of the joint, but it is not effective at improving and sustaining long-term joint health.

Shoulder instability is the loss of the ability to maintain joint alignment, with associated symptoms of pain, apprehension, joint “slipping,” and/or paresthesia. Recurrent shoulder instability most commonly occurs due to traumatic causes through contact sports or overhead sports (e.g., pitching in baseball). There can also be atraumatic causes from congenital shape of the bone. People with shoulder instability are at increased risk of post-traumatic OA, and there is evidence of an increased mortality rate associated with this injury. One modifiable risk factor for shoulder instability is strength.

Recent studies comparing surgical versus nonsurgical treatment of ACL and shoulder injuries indicate that surgery does not protect against OA after ACL or shoulder injury. Overall, there is very little evidence-based rehabilitation science in sports medicine. There is a need for randomized controlled trials that identify factors that lead to poor outcomes or reinjury and develop valid assessment tools for safe return to sport.

Discussion (2:04:46)

In response to a board member question, Dr. Palmieri-Smith said that there is no data about the association between the amount of rehabilitation and ACL reinjury. Patients were returning to sports based not on specific criteria but on an arbitrary amount of recovery time of around 6 to 9 months. When these patients are tested for research-based criteria for returning to sport after 6 or 9 months of recovery, they do not meet these criteria. This finding indicates that longer rehabilitation time is needed, but that is difficult for student athletes who want to return to their sport to compete for college scholarships.

A board member asked whether there are studies of psychological factors associated with ACL reinjury. Dr. Palmieri-Smith said there is no strong evidence that kinesiophobia leads to ACL reinjury, but there is strong evidence that patients experience that fear when returning to their sport. Dr. Nitkin and Dr. Palmieri-Smith discussed how kinesiophobia leads to abnormal, overprotective behaviors that could cause more problems. People recovering from ACL injury might avoid bearing weight on the injured knee, a pattern that can cause long-term joint health problems and increase the risk of OA. Regarding load bearing after knee injury, Dr. Palmieri-Smith and a board member discussed how there are no research studies that follow patients long-term after ACL injury and recovery to see how load bearing affects whether the injured or uninjured knees develop OA. Another board member asked whether there is research on psychological outcomes after sports injury. Dr. Palmieri-Smith said that this type of research is being conducted, but the area is understudied. The psychological outcomes associated with back pain, ACL injury, and concussion are the most studied.

Dr. Palmieri-Smith and another board member discussed the challenges with funding opportunities supporting sports injury research and how better funding would advance this field. The sports medicine field needs to make a better case for why funding is needed to study sports injury, including the costs and long-term health consequences associated with injury. There also need to be more mechanistic studies to understand what leads to poor long-term outcomes after injury and then develop rehabilitation to target those risk factors.

Dr. Palmieri-Smith discussed with another board member how the sports medicine field should consider using sensorimotor control treatments rather than structural tissue surgery to treat sports injuries.

Back Injury (2:16:45)

Linda Van Dillen, PT, Ph.D., Division Director of Research and Professor of Physical Therapy and Orthopedic Surgery, Washington University School of Medicine in St. Louis

Dr. Van Dillen said that low back pain (LBP) is an extremely common symptom and not a disease. LBP is the most prevalent musculoskeletal condition, the leading cause of years lived with disability, and the sixth highest contributor to disease burden globally. LBP is defined by its location, and most LBP is diagnosed as nonspecific.

The current first line of treatment for nonspecific LBP is non-pharmacological and focuses on alleviating a person’s pain and counteracting associated disability rather than targeting a specific anatomical or physiological function. There is also variability in who will recover from LBP and who will experience recurrence. Based on this, the current framework for research and treatment is the biopsychosocial model, in which multiple factors interact to contribute to clinical presentation and course of the condition. The challenge is determining the relative importance of these biopsychosocial factors for each individual LBP patient. Studies of these biopsychosocial factors are focused on motor control, including trunk muscle activity and trunk movements and postures, muscle structure alterations associated with LBP, pain mechanisms underlying LBP (i.e.., nociceptive, nociplastic, and neuropathic), and psychological factors associated with LBP (i.e., general and pain-specific psychological factors). There are also studies focused on the social factors that may influence LBP and related disability, including social disadvantage and social factors related to work, clinical care, and home environment.

The current recommended approach to move LBP research forward is to follow a precision medicine model in which individual differences in patient characteristics, environment, and lifestyle are accounted for when developing an individualized rehabilitation program. The two lines of precision medicine LBP research are focusing on subgrouping or phenotyping people based on various biopsychosocial factors and on developing and testing multidimensional clinical reasoning algorithms to find a specific treatment.

Discussion (2:41:08)

Dr. Van Dillen and a board member talked about how LBP rehabilitation research does not use wearable and digital tools as much as neurorehabilitation research does, but there is some work using wearables to measure activity levels. It is difficult to use wearables to measure the biopsychosocial factors associated with LBP, but this area is still being explored.

A board member asked about using technology to administer massage as a treatment for LBP. Dr. Van Dillen said that most literature focuses on passive treatments like massage for LBP, but the field is recognizing the need for active treatments. Even if researchers develop these technologies, there are issues with adherence and properly using this technology to provide long-lasting therapeutic effects. Dr. Van Dillen’s research focuses on changing movement behavior and function that LBP patients can practice in their everyday activities.

Dr. Van Dillen and a board member discussed family conflict and trauma as social factors that negatively affect the ability of people with LBP to engage in rehabilitation. Also, people who experience family conflict and trauma, particularly during childhood, are more susceptible to developing LBP. There is an opportunity to evaluate patients’ families as part of LBP treatment.

In response to a question from a board member about clinical assessment tools for LBP, Dr. Van Dillen said that there is the Optimal Screening for Prediction of Referral and Outcome Yellow Flag assessment tool, which looks at psychological and social factors that could negatively affect the long-term prognosis for LBP.

Final Summary and Planning for the Next Meeting (2:48:37)

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

Dr. Bregman asked NABMRR members to share any potential topics for future NABMRR meetings. Board members are welcome to email Dr. Cruz or Dr. Nitkin with ideas after the meeting. Suggestions included the following:

  • Holding a session about NIH funding levels on some of the topics heard during the meeting. Dr. Cruz said that NIH needs to do more work to track funding levels for specific rehabilitation topics. The board’s role is to call for investigator-initiated ideas for research, so these presentations are meant to show where research is needed. Board members can include areas where research is needed in the NIH Research Plan for Rehabilitation and in their own communities and organizations.
  • Inviting researchers or people in specific careers who have successfully combined mechanistic and rehabilitation research in their work.
  • Hearing from the Advanced Research Projects Agency for Health about rehabilitation projects.
  • Inviting Mark Jensen, Ph.D., from the University of Washington to speak to the NABMRR about his research on psychosocial mechanisms involved in pain. Also, there could be a session on mentoring future rehabilitation scientists, especially those from underrepresented communities.
  • Learning about how to combine basic and applied research, specifically how technologies have been improved or sun-setted based on basic science research. Also, it would be good to hear about research models on the influence of social determinants of health on precision medicine and rehabilitation.

Several board members agreed with keeping the hybrid format of the meeting. They also said that the advantage of having the meeting over the course of 1-1/2 days encourages people to stay and socialize at the dinner after the first day.

Adjournment (3:02:01)

Dr. Bregman thanked the NAMBRR for their thoughtful participation. Dr. Cruz thanked Dr. Bregman for leading her first NABMRR meeting as chair and thanked the speakers and support staff. Dr. Cruz adjourned the meeting at 12:05 p.m.

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