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Summary Minutes - Dec 1-2, 2005

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Dr. Rory Cooper, Board Chair, called the 32nd meeting of the NABMRR to order at 9:00 a.m. Minutes from the previous meeting were approved.

Future Board Meetings

May 4-5, 2006
December 7-8, 2006
May 3-4, 2007

Members Present

Rory Cooper, Chair
Leticia Castillo
Ken Giacin
Meredith Harris
Lisa Iezzoni
Alan Jette
John Kemp
William Zev Rymer
Marca Sipski
Margaret Turk
Carolee Winstein

Members Absent

Diana Cardenas
Alberto Esquenazi
Murray Goldstein
Ada Sue Hinshaw<
Regino Perez-Polo
Sue Swenson

Ex-Officio Members Present

Duane Alexander, NICHD
Daofen Chen, NINDS
Gilbert Devey, NSF
Amy Donahue, NIDCD
Martin Gould, NCD
Robert Jaeger, NIDRR
Naomi Kleitman, NINDS
Kathy Koepke, NINR
James Panagis, NIAMS
Robert Ruff, VA
Michael Weinrich, NICHD

Ex-Officio Members Absent

John Crews, CDC Anne O'Mara, NCI Rosemary Yancik, NIA

NICHD Staff and Visitors

Beth Ansel
Mel Carter
Saryn Goldberg (CC)
Marc Goldstein (APTA)
David Gray (Washington U)
Anne Krey
Ralph Nitkin
Louis Quatrano
Carol Sheredos
Nancy Shinowara
Steven Stanhope (NICHD)
Donald Stein (Emory)
Susanne Strickland
Bial Tian (CSR)
Janice Wahlmann

INTRODUCTIONS AND UPDATE ON MEMBER ACTIVITIES

The four new Board members introduced themselves (Drs. Castillo, Iezzoni, Turk, and Winstein). In addition, Dr. Gray and Stein, current members of the NICHD Advisory Council, were present to participate in the afternoon discussion of the NCMRR Report.

As in previous meetings, Board members provided updates on their outside efforts to promote the goals of medical rehabilitation research and the activities of NCMRR.

Rory Cooper led a workshop at the June meeting of the Rehabilitation Engineering Society of North America and is working with the NCMRR to develop a special 25th anniversary issue of the Journal of Assistive Technology. He also participated in a research summit sponsored by the American Congress of Rehabilitation Medicine (ACRM), which was quoted in a JAMA article, "Medical Rehabilitation as a Health Issue"

Zev Rymer is serving as liaison to the NICHD Advisory Council. He is active in various research training activities including a grantsmanship workshop and a national career development program for physiatrists.

Marca Sipski is working to improve outcome measures for spinal cord injury. She is serving as president to the American Spinal Cord Injury Association (ASIA), which has links to the international spinal cord community.

Meredith Harris is mentoring young investigators and participated in the recent III Step Conference involving physical therapists and other researchers in movement sciences.

John Kemp is active in disability civil rights, especially through the National Association of Rehabilitation Centers and the promotion of a disability rights agenda.

Alan Jette directs the Health and Disability Research Institute to improve rehabilitation measures and chairs the Institute of Medicine (IOM) committee to update the 1991 report of Disability in America.

Ken Giacin is involved in the development of a cord blood bank, and continues his collaborations with rehabilitation researchers.

REPORT OF THE NCMRR DIRECTOR

Dr. Michael Weinrich began with some thoughts on Dr. Ken Viste, a member of the Board who had recently passed away at his home in Oshkosh, Wisconsin. Although he had polio as a child and had to use a wheelchair, Ken went on to graduate college Phi Beta Kappa and attended Northwestern Medical School. He was active in community, activities, charitable causes, and several professional organizations serving as president of the American Academy of Neurology from 1995-1997. He was an effective advocate for research and other health care issues in his role as advisor to past directors of the Department of Health and Human Services and in giving testimony to Congress. The rehabilitation community also mourns the loss of Deborah Wilkerson, advocate, outcomes researcher and recent past president of the American Congress of Rehabilitation Medicine.

Dr. Weinrich indicated that NCMRR funding continues to increase, topping $75 million in the past fiscal year. This growth is due to the continued development of a cadre of rehabilitation researchers and the tireless efforts of NCMRR staff. Rehabilitation researchers are actually doing better than the NICHD average, despite very tight paylines. At this point, the NICHD has not established a payline for the current year pending the final appropriation numbers. Because of commitments to current research grants and other large research programs, the limited increases in the NICHD budget will restrict the number of new grants competitive renewals that can be initiated. Unfortunately, the number of new applications to the NIH continues to rise. Within the NICHD there is a severe constriction for career development (K awards) and departmental training grants (T awards), but hopefully this will only be a temporary setback.

Constraints on NIH staffing continue. There has been increased emphasis on centralized management and limits in hiring new staff. The Secretary of Health and Human Services has put out a 500-day plan to define major objectives for the Department. Goals for the NIH include advancing medical research, building interdisciplinary research teams, and advances in the prevention, early diagnosis, and treatment of disease.

Despite cutbacks in travel funds, NCMRR staff will continue to try to cover appropriate research and professional meetings. Dr. Weinrich also highlighted the new NCMRR website publication, Innovations, which was mailed out to NCMRR grantees and supporters. The NCMRR is supporting a second phase of research infrastructure grants, with six centers that provide expertise and collaborations in the areas of: neurorehabilitation and robotics, cognitive rehabilitation and brain imaging, neurosciences and functional regeneration, proteomic and genomic analysis, and muscle physiology (for more background and specific contact information go to www.ncmrr.org External Web Site Policy. The NCMRR continues to support young investigators through departmental training grants, individual career development awards and postdoctoral fellowships, and national career development programs for specific clinical disciplines (physiatry and pediatric critical care).

FOLLOW UP OF NCMRR FUNDING INITIATIVES

Dr. Ralph Nitkin lead a discussion on the effectiveness of Program Announcements (PAs) and Requests for Applications (RFAs) for meeting the strategic goals of the NCMRR. He discussed how program staff develops ideas and solicits input from the research community, the NICHD prioritization and approval process, and opportunities to involve other NIH Institutes and federal funding agencies.

Dr. Nitkin indicated that the RFA mechanism has advantages and disadvantages. On the positive side, it highlights research needs, has specific funds set aside for meritorious applications, gets a specially tailored peer-review group, and tends to attract potential researchers and collaborators from allied fields. However, RFAs have a short lifespan. They have a short turn-around and require a rapid response from potential applicants. Moreover, the RFA is a one-time solicitation, so unsuccessful applicants cannot revise and refine their proposals for the targeted review panel. The RFA generally does not provide research infrastructure or broader support for emerging research areas, nor are specific funds set aside to extend or renew successful studies in future years. Nonetheless, interested applicants are always welcome to channel their efforts into regular investigator-initiated proposals that go into the normal NIH review process.

An effective PA or RFA should define an emerging research opportunity that has a critical mass of appropriate expertise but lacks appropriate number of applications to the NIH. The research document should stimulate and challenge the research community, inspire unique collaborations among researcher specialties, and even create a buzz that extends beyond the life of the solicitation itself. Hopefully, the cohort of funded grants will be productive leading to novel approaches and therapeutic strategies; possibly some of the unsuccessful applicants will persist with their efforts and eventually get funding through the standard investigator-initiated channels. The Board discussed whether there was adequate support to adapt research findings to community settings.

RESEARCH ON PARTICIPATION AND THE IOM REPORT ON DISABILITY

Dr. Alan Jette is chairing an Institute of Medicine committee to revise the 1991 and 1997 report on Disabilities in America. Key issues are the concept of "disability", disability trends across the lifespan, the changing evidence base, and the future challenges faced by society given ongoing and future demographic changes. The report will highlight gaps in evidence and future research priorities.

Dr. Jette went on to discuss his own research on going beyond "function" to measure "activity" and "participation" outcomes. The World Health Organization classification focuses on limitations of activity and participation in assessing the impact of rehabilitation. It defines participation as involvement in life situations. Although most researchers tend to lump activity and participation, Dr. Jette and his research team have tried to highlight distinctions between these two concepts. His research applies contemporary measurement techniques from the fields of education and psychology to key outcomes in rehabilitation. Item-response theory explores correlations among a large pool of potential factors and various outcome scales, which are then applied to real-world settings. The analysis of these factors is facilitated by computer adaptive testing approaches. Activity subscales focused on activities involving applied cognitive, personal and instrumental, and movement and physical domains, while participation can be reduced to seven domains covering mobility, role functioning, social and civic life, domestic life and self care, communication, social relationships, home management and finances. However participation domains have diverged with respect to community participation versus social and home participation.

Dr. Jette's research examined which participation factors in the International Classification of Functioning, Disability, and Health (ICF) model are most predictive of positive rehabilitation outcome in participation. He found community participation was correlated with increased activity level and better social support but was negatively correlated with the onset of significant illness and decreased mobility. Social and home participation was correlated with better social support, higher levels of persistence, and higher levels of applied cognitive activity, but negatively impacted by complex medical complications.

Future research goals include refining computer adaptive testing instruments, extending assessments to more diverse post-acute care settings, and building data repositories. In fact, the Center for Medicare and Medicaid Services has become very interested in using these approaches to monitor the quality of post acute care services and adjust reimbursement policies.

REVIEW OF THE NCMRR REPORT TO NICHD COUNCIL

Branch and Center reports within the NICHD are now more focused on soliciting broad input from the research community and promoting future research opportunities. In order to invite comments from Board members, the NCMRR provided a draft of the report to Board members a few weeks prior to this meeting. In addition, Drs. Gray and Stein, current members of the NICHD Advisory Council were invited to participate in the discussions.

Dr. Weinrich highlighted some sections of the report. He presented an analysis of the research supported by the NCMRR over the last five years sorted by grant mechanisms, by clinical issues, and by research priorities (as defined in the original 1993 Research Plan for the NCMRR). He also presented a new framework for disability research that highlights opportunities to intercede at the transitions that link the domains of pathophysiology -> organ dysfunction -> task performance -> societal roles.

The Board strongly felt that the executive summary had to be presented in a more dynamic format, because it is this section that provides entrée to the larger document and it may be all that the casual reader takes away from the report. The section on applied rehabilitation technologies seems to only describe advances from small business grants; it should also include findings from research grants that relate to the development of fundamental technologies. The section on basic research is not representative of the broad range of research approaches supported by the NCMRR. The disablement model should take into account motivation and initiation, because these can also be impaired in certain conditions. Moreover, the model needs to consider patient preferences. The report should highlight what the NCMRR has done well, what could be done better, and what are the barriers to medical rehabilitation research.

The Board provided some additional ideas for the "future directions" section, including: human-machine interfaces; access to unique technologies; interactive technologies evolving to meet the needs of persons with disabilities (e.g., wearable sensors, smart devices, adapting to the person and the environment); cell, tissue, and organ plasticity; regenerative rehabilitation; and, bringing interventions into the community.

Ultimately the report should show how people with disabilities have benefited from NCMRR-supported research. The report should also discuss how the NCMRR promotes rehabilitation research through its interactions with other NIH Institutes and government agencies. NCMRR programs can impact the field in terms of promoting translational studies, support and attracting new rehabilitation investigators, driving basic research to clinical applications and community settings, and being more responsive to consumer needs. Thus, NCMRR research should focus not just on efficacy but also effectiveness (success in real-world settings), and this may require additional funds for dissemination efforts. To help in demonstrating the effectiveness of NCMRR research programs, investigators should be asked to provide examples of impact of their work: Who knows about their finding? Who is using the research? What is the impact on practice? What derivative studies arose from these findings?

REPORT OF THE NICHD DIRECTOR

Dr. Duane Alexander thanked the new and continuing members for their service on the NCMRR advisory board and their input into the Council Report. The NCMRR will be asked to provide an interim report on its progress to these goals in another two years.

Congress did not approve the new NIH budget by September 30th, so we are operating on a continuing resolution, which maintains funding at fiscal year (FY) 2005 levels. The FY 2006 budget is still being debated between the House and Senate parties. A proposal to remove the "earmarks" from the budget was voted down; at which point Senator Arlen Spector proposed the Senate provide an $800 million increase in the NIH budget. Under the continuing resolution, the NIH will start funding non-competing grants at 80% of their approved levels. However, without a significant increase in funding, the NICHD will not be able to maintain a 14 percentile payline and will need to make deeper administrative reductions in the grants that it does support.

In response to a question from the Board about new investigators and career development awards, Dr. Alexander indicated that the NICHD would try to support as many as possible. The Board also asked about the possibility of predoctoral support, but Dr. Alexander indicated that the training line is already tight and the Institute only supports individual fellowships at this level for candidates who are from underrepresented minorities or people with disabilities.

Dr. Alexander indicated that ethics and conflict-of-interest regulations recently imposed on NIH employees have been relaxed with respect to issues of stock ownership and professional speaking opportunities, however restrictions remain with respect to consulting with industry and accepting remuneration. These policies tend to impact more in the intramural program especially in the recruitment of new research scientists. NICHD extramural programs are currently recruit replacements for four branch chiefs.

NIH Roadmap activities continue but will not be allowed to grow at a rate faster than that of the overall NIH budget. The NIH is also developing a neurosciences blueprint, which will involve 11 institutes (including the NICHD). The Board asked about the range of rehabilitation research activities in the intramural programs. Dr. Alexander indicated that the NICHD is currently supporting a Physical Disabilities branch (lead by Dr. Steven Stanhope) with cofunding from the Clinical Center. A tissue-engineering program was also considered, but it was left to the other relevant NIH Institutes that already support research in this area.

Dr. Alexander also discussed some initiatives to improve the quality of scientific peer review. This includes an on-line training module to sharpen the review of specialized grant mechanisms, especially the concept of "high-risk" research required for an R21 application. The NIH is trying to increase the extent of research on pediatric populations, which would also include children with disabilities. Although there are regulations for the inclusion of children in subject populations, many investigators are skirting the issue by only including 18-21 year olds.

NEW BUSINESS AND AGENDA FOR NEXT MEETING

Topics for future Board meetings include a discussion of consumer empowerment, a profile of NMCRR-supported researchers, and specific research talks from current Board members.

The meeting was adjourned at 11:45 a.m.

Respectfully submitted,

________________________ ________________________
Ralph M. Nitkin, Ph.D.     Date Rory Cooper, Ph.D.    Date
Executive Secretary, NABMRR Chair, NABMRR
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