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Summary Minutes - May 4-5, 2006

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Dr. Rory Cooper, Board Chair, called the 33nd meeting of the NABMRR to order at 9:10 a.m. Minutes from the previous meeting were approved.

Future Board Meetings

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

Members Present

Rory Cooper, Chair
Diana Cardenas
Leticia Castillo
Alberto Esquenazi
Ken Giacin
Murray Goldstein
Meredith Harris
Lisa Iezzoni
Alan Jette
John Kemp
Regino Perez-Polo
Marca Sipski
Margaret Turk
Carolee Winstein

Members Absent

William Zev Rymer Sue Swenson

Ex-Officio Members Present

Daofen Chen, NINDS
Martin Gould, NCD
Robert Jaeger, NIDRR
Naomi Kleitman, NINDS
Kathy Koepke, NINR
Yvonne Maddox, NICHD
Robert Ruff, VA
Mark Swanson, CDC
Michael Weinrich, NICHD

Ex-Officio Members Absent

Amy Donahue, NIDCD
Anne O'Mara, NCI
James Panagis, NIAMS Rosemary Yancik, NIA

NICHD Staff and Visitors

Beth Ansel
Carolyn Braddom-Ritzler (AAP)
Vincent Fields (AAP)
Marc Goldstein (APTA)
Mike Hall (AOTA)
Alyson Haywood (AOTA)
Mona Hicks (NINDS)
Tammy Jenkins
Lisa Kaeser
Hameed Khan
Anne Krey
Tim Nanof (AOTA)
Ralph Nitkin
Louis Quatrano
Josephine Pelham (CSR)
Nancy Shinowara
Steven Stanhope (NICHD)
Margaret Stineman (U Penn)
Peter Thomas (NCMRR Coalition)
Janice Wahlmann
Al Wigmore

INTRODUCTIONS AND UPDATE ON MEMBER ACTIVITIES

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

Marca Sipski is serving as president of the American Spinal Cord Injury Association (ASIA) and is active in the development of standards for autonomic nervous system function in spinal cord injury (SCI). She recently participated in a conference on measurement in SCI ranging from motor function to quality-of-life.

Regino Perez-Polo is leading a research consortium that is focusing on function and cognitive problems in low birth weight babies. The consortium is integrating approaches ranging from molecular to behavioral.

Diana Cardenas just moved from Seattle to Miami to increase research capacity in that location, especially in the area of SCI. She will be active in the health and rehabilitation of active military service persons and veterans and is currently involved in a clinical trial to treat urinary tract infections in SCI.

Rory Cooper participated in a Rehabilitation Engineering Society of North America (RESNA) workshop on grant-funding opportunities. He recently published a book on rehabilitation engineering and assistive technologies, based on a recent workshop at Walter Reed Army Medical Center. He is working with the NCMRR to develop a special 25th anniversary issue of the Journal of Assistive Technology.

Margaret Turk participated in the Institute of Medicine (IOM) panel on the future of disability statistics. She is also active in the certification and education of physical medicine and rehabilitation physicians (PM&R). She worked with American College of Obstetricians and Gynecologists on the dissemination of information for women with disabilities.

Lisa Iezzoni published a book, More than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities that examines the special challenges of health-care access for persons with sensory and physical disabilities.

Alan Jette continues to lead the effort to update the IOM report Disability in America due to come out in 2007. He is also working with the Centers for Medicare and Medicaid Services to monitor functional outcomes across acute care settings using computer-assisted data-entry technologies.

Murray Goldstein retired from the United Cerebral Palsy Foundation, but remains active in international research activities. Recently, he participated in an international workshop to update the definition of cerebral palsy, which has not been revised in 35 years. He is working with the U.S. Department of State to promote research collaborations in the Middle East, including a randomized trial on cerebral palsy treatments. He also participated in a workshop on the impact of adolescence for children with disabilities.

Ken Giacin continues his involvement with the cord-cell blood bank to develop stem cells for treatment of leukemia and genetic diseases. He is also working to help small, start-up companies seek venture capital.

Carolee Winstein is enjoying her sabbatical at McMaster University in Canada. She is involved in a follow up study of stroke recovery that evaluates community reintegration. She is developing a multi-site, phase-three clinical trial to promote arm rehabilitation in stroke and a paper on clinical trial methods for SCI, stroke, lower back pain, and cerebral palsy.

Meredith Harris continues her work mentoring rehabilitation trainees and is collaborating with the Bobath Center in London on treatments for cerebral palsy.

Alberto Esquenazi is doing research on the role of cognition in mobility. He is pleased to say that the hospital relocation is now complete.

Leticia Castillo continues her clinical work on the multidisciplinary management of children with disabilities. A large portion of these children are overweight despite efforts at nutritional management,and it is difficult to measure energy expenditure in this population. Her research is focusing on the amino acid requirements of critically ill children.

John Kemp is active in disability rights, vocational support, and social progress. He also works in the international arena and recently extended collaborations into Trinidad and Tobago. He has been active in the One Percent Coalition, which encourages competitive employment of at least one percent of people with severe disabilities through federal contract incentives. He has also been working with private equity funds to encourage investment in the disability and aging market.

REPORT OF THE NCMRR DIRECTOR

Dr. provided an update on NCMRR activities. Tammy Jenkins, a critical care nurse from the NIH Clinical Center, recently joined the Pediatric Critical Care and Rehabilitation (PCCR) program of the NCMRR. Dr. Weinrich emphasized that the growth of the PCCR program did not come at the expense of other NCMRR activities, but was built on getting pediatric researchers to develop quality applications that met the NICHD payline. Moreover, the program offers special opportunities to explore opportunities in pediatric rehabilitation and develop a research base in critical care medicine.

The Institute has been funding applications up to about the 10th percentile and anticipates that this would continue into the next few rounds of application review. Within these funding constraints, NICHD program officials had a small amount of discretion to support/skip specific proposals and adjust levels of necessary administrative reductions. The NICHD administrative support budget was also significantly reduced, impacting staff travel and support for meetings and workshops. The outlook for fiscal year (FY) 2007 was uncertain, especially in this election year. The NIH appropriation would probably be delayed until some time in early 2007, so the Institutes would likely operate under a "continuing resolution" until then.

The NCMRR launched a new career development initiative using the K12 mechanism. This initiative would support national mentoring networks in allied health, rehabilitation engineering, and neurorehabilitation. Applications are due in September 2006.

Dr. Weinrich thanked the Advisory Board for their input into the NCMRR Report to the NACHHD Council, which has now been published [www.nichd.nih.gov/publications/pages/pubs_details.aspx?from=&pubs_id=5049]. The NCMRR is also developing the second edition of its e-update newsletter to be sent out to NCMRR researchers and supporters. The biennial NCMRR training meeting, which took place in December 2005, was very successful an included about 200 participants. It promoted research opportunities and networking in medical rehabilitation. In the upcoming year, NCMRR would be developing meetings focused on such topics as outcomes measurement in medical rehabilitation, plateaus of recovery, and pediatric quality-of-life measurements. The NCMRR is attempting to initiate a formal collaboration with the Center for Medicaid and Medicare Services on the appropriateness of rehabilitation sites, contrasting in-patient and out-patient approaches.

Dr. Weinrich reported that the Coalition for the NCMRR met with Drs. Duane Alexander and Yvonne Maddox, and later with NIH Director Zerhouni. The Coalition had significant concerns about the direction of the NCMRR, including: support for investigator-initiated versus programmatic studies, basic research versus other approaches, and the integration of rehabilitation activities across the NIH. Dr. Weinrich indicated that there had been growth in the quality and number of rehabilitation applications, so there had already been a significant increase in rehabilitation research capacity.

Peter Thomas, who was attending the Advisory Board meeting, provided some additional background on the Coalition for the NCMRR. Although there is a broader group, Friends of NICHD, which provides support for NICHD research in general, the Coalition supports the NCMRR in particular. The Coalition is an ad hoc organization of advocates that are independent of the NCMRR and the NIH. Mr. Thomas provided some historical background on the creation of the NCMRR by federal legislation in the early 1990s. He noted that he served on the original NCMRR Advisory Board from 1992-1997, which helped develop the original research plan for the NCMRR [www.nichd.nih.gov/publications/pubs/upload/plan.pdf]. Early efforts were targeted at establishing rehabilitation at the institute level within the NIH, but compromised to a center-level focus due to limitations in initial staffing and infrastructure. However, advocates are still working toward the idea of a free-standing center at the NIH for medical rehabilitation research. The original NCMRR research plan had twice been ratified by subsequent Board members, but Mr. Thomas raised the possibility that the plan may need to be updated to account for past progress and new research opportunities. He emphasized that this dialogue should not be limited to physicians, but should also include therapists and the disability community.

Peter Thomas, who was attending the Advisory Board meeting, provided some additional background on the Coalition for the NCMRR. Although there is a broader group, Friends of NICHD, which provides support for NICHD research in general, the Coalition supports the NCMRR in particular. The Coalition is an ad hoc organization of advocates that are independent of the NCMRR and the NIH. Mr. Thomas provided some historical background on the creation of the NCMRR by federal legislation in the early 1990s. He noted that he served on the original NCMRR Advisory Board from 1992-1997, which helped develop the original research plan for the NCMRR [www.nichd.nih.gov/publications/pubs/Documents/plan.pdf (PDF - 223 KB]. Early efforts were targeted at establishing rehabilitation at the institute level within the NIH, but compromised to a center-level focus due to limitations in initial staffing and infrastructure. However, advocates are still working toward the idea of a free-standing center at the NIH for medical rehabilitation research. The original NCMRR research plan had twice been ratified by subsequent Board members, but Mr. Thomas raised the possibility that the plan may need to be updated to account for past progress and new research opportunities. He emphasized that this dialogue should not be limited to physicians, but should also include therapists and the disability community.

REPORT OF THE NICHD DIRECTOR

In Dr. Alexander's absence, NICHD deputy director Dr. Yvonne Maddox provided some updates on NIH activities. She discussed senior staffing changes at the NIH and within the NICHD. She praised the recent presentation of the NCMRR to the NACHHD Advisory Council that included brief research talks from Drs. Hunter Peckham and Steve Wolf on translational research and clinical trials. The NCMRR also emphasized its leadership role in promoting rehabilitation research across the NIH. Dr. Maddox indicated that the NCMRR Report to Council was still open to the community for further opinions and input.

The NICHD received an appropriation of $1.26 billion in FY2005 as well as $88 million in cofunding that allowed the Institute to support 1769 continuing and 505 new grants and 835 trainees. FY2006 was more problematic because of a relatively large non-competing grant base, which constrained flexibility and the number of new grants supported. Further, the Institute could support only 808 trainees. Grant support would be stretched through the use of administrative reductions: 17% on most grants and 22% on larger grants requesting more than $250,000 annual direct costs. As with other NICHD programs, the allotment of grant funds to the NCMRR was based on the number of NCMRR applications that scored in the uppermost ten percentiles. In addition, the Institute was reexamining particularly large grant requests and applications transferred from other NIH Institutes, but would still consider cofunding opportunities.

For FY2007, the President's budget would hold the NIH to FY2006 funding levels with increased oversight through the new Office of Portfolio Analysis and Strategic Initiatives (OPASI). Current OPASI activities focused on Biodefense, Pathways to Independence, Roadmap, and initiatives related to genes and the environment and to pandemic flu. Under the President's proposed budget, the NICHD would have similar levels of support in FY2007, but with increased funding constraints. In future years, the NICHD would only be able to promote a limited number of new initiatives, but was considering two possible initiatives from the NCMRR for FY2008. The Board hoped that OPASI does not politicize scientific priorities. Dr. Maddox explained to NABMRR members that OPASI was created to deal with redundancy and overlap across Institutes, and to address research opportunities that did not currently map to any specific Institute portfolio.

The Center for Scientific Review is providing more rapid feedback for new investigators to reduce turnaround times. There have been some difficulties with the conversion to electronic submission mostly due to lack of technical support. The NIH pushed back the date for conversion of R01 applications to electronic format until February 2007. Some Board members described problems with the new electronic submission system, such as not knowing that they were using the wrong form until the complete application was submitted, or not getting timely feedback on other submission errors. In related developments, the NIH announced that future grant solicitations would be listed on the common E-Gov site. However, a representative from the National Council on Disability at the Board meeting indicated that their agency only puts pre-solicitations on the E-Gov site, with a link back to the full description on their own Web sites.

The Board also asked Dr. Maddox about the National Children's Study. She indicated that the Office of Management and Budget had recommended terminating support for the Study, but that the provision remained in the NIH appropriation with no additional dollars set aside. This situation put the NICHD in the position of having to support this major initiative without the necessary fiscal support. Dr. Maddox estimated that about $12.5 million would be needed just to keep the initial Vangard Centers going.

BACKGROUND ON INCOMING BOARD MEMBERS

The following new members will join the Board in December 2006:

Martha E. Banks, Ph.D. is associate professor of Black studies, College of Wooster and in the Research and Development Division of ABackans DCP, Akron, Ohio. She is a clinical neuropsychologist who has developed assessment batteries for traumatic brain injury. She has a particular interest in disability issues that relate to women, minorities, and geriatric populations.

Richard M. Greenwald, M.S.E, Ph.D., is founder and president of Simbex, LLC, Lebanon, New Hampshire with an adjunct appointment at Dartmouth College. He is a bioengineer interested in the prevention and assessment of traumatic brain injury and other sports-related injuries in children.

Joy Hammel, O.T., Ph.D. is assistant professor of occupational therapy at the University of Illinois, Chicago. She is interested in aging and developmental disabilities with particular interest in participation, societal support, allocation of resources, and the impact of disability. In addition, she is the parent of a child with a disability.

Linda Robinson, R.N., M.S., M.A. is trauma research manager at Inova Regional Trauma Center, Inova Fairfax Hospital, Virginia. She is very active in education, training and advocacy as related to traumatic brain injury and nursing care.

Marcia J. Scherer, Ph.D., M.P.H. is associate professor of PM&R at the University of Rochester Medical Center, New York and director and president of Matching Person and Technology, Webster, New York. With a background in both engineering and psychological assessment, she is particularly interested in the impact of assistive technologies and rehabilitative approaches.

Steven Wolf, P.T., Ph.D. is professor of rehabilitation medicine at Emory University, Atlanta, Georgia. He has performed extensive studies in the physiological control of movement and is particularly interested in rehabilitative strategies and disability in stroke an interest that has culminated in clinical trials for constrained use therapies.

NOMINATIONS FOR NEW CHAIR-ELECT

With the conclusion of this meeting, Rory Cooper would finish his term as Board chair and Alberto Esquenazi advances from the position of chair-elect to chair. Nominations were sought for the next chair-elect and, after a brief discussion, some excellent nominees emerged. Dr. Diana Cardenas was elected my majority vote through private written ballot.

NEW THEORIES FOR NERVOUS SYSTEM FUNCTION: PUTTING US ON AUTONOMIC PILOT

Dr. Marca Sipski provided some background on her studies of autonomic function in SCI, as exemplified by sexual response and the nerve fibers of light touch. She described techniques for measuring physiological aspects of sexual response and correlating them with subjective measures. Much of this response involved spinal cord levels T11 through L2.

In collaboration with Dr. Lesley Morrison, Dr. Sipski also explored the urethrogenital reflex in rats. They found that the pelvic nerve was required for sympathetic input, and that the hypogastric nerve had a significant effect on vaginal blood flow. They used molecular genetic techniques to map out the pathways and found that the pelvic nerve had more diffuse interactions in spinal levels L5, L6, and S1, but that the pudentic nerve had more isolated connections.

Dr. Sipski is currently extending her clinical studies on autonomic function to include women with multiple sclerosis. Future studies would involve the use of drugs to target sympathetic nervous system function as well as assistive devices to enhance sexual function in people with nerve damage. Similar neurologic strategies could be used to retrain autonomic reflexes in bladder control.

WHO APPLIES TO THE NCMRR AND HOW DO THEY DO?

In order to address possible concerns about the support of rehabilitation research at the NIH, Dr. Ralph Nitkin analyzed the extent and success of research applications to the NCMRR during the last few years (FY2000-2006). During this time, more than 3000 applications were assigned to the NCMRR, about half of which (1555) utilized the R01, R21, and R03 research mechanisms. Some of these applications represented revisions, so his analysis focused on 957 unique research applications.

The majority of these R01/F21/R03 applications were investigator-initiated proposals (76%), as opposed to applications submitted in response to special funding initiatives (i.e., Requests for Applications). Nonetheless, the "success rates" across these two groups were remarkably similar, 24% and 22%, respectively. The success rate of the NCMRR applications was very similar to that of the NICHD as a whole. During this same seven-year period, the NICHD rate varied from a low of 17.1 (FY2004) to a high of 29.1 (FY2000), suggesting that medical rehabilitation applications were not disadvantaged in the highly competitive peer-review arena of the NIH.

Dr. Nitkin provided further analysis on the number and success rate of these R01/R21/R03 research applications with respect to the professional domains of the applicants. Most of the applications (77%) were submitted by researchers with Ph.D. degrees, including (in priority ranking) clinical and basic psychology, movement and motor control, neuroscience, physiology, more basic biology, and other disciplines. Some of the Ph.D.s (19%) also had degrees in allied health; physical therapy was most prominent degree followed by occupational therapy, speech/language/hearing, and nursing (although the latter two groups also had connections to other NIH Institutes). Some of the Ph.D.s (19%) had training in engineering specialties, including biomedical engineering, biomechanics, electrical engineering, and biomaterials/tissue engineering.

A significant number of the R01/R21/R03 applicants (27%) to the NCMRR had M.D. degrees, including a small number (5%) of joint M.D./Ph.D. degree holders. Clinical specialties represented included (in priority ranking) medicine, pediatrics, PM&R, neurology, surgery, psychiatry, and orthopedics.

The success rate of NCMRR applications was remarkably similar across all these professional domains. During the last seven years, Ph.D.s applying to the NCMRR had an aggregate success rate of 26%. The subset with allied health backgrounds had a slightly higher rate (30%) while engineers scored somewhat lower (23%) but this may be due to the fact that engineers tended to apply more often for the more competitive R01s versus the smaller R03 or R21 mechanisms. Applicants with MD degrees had success rates of 25% a figure that did not seem to vary significant across the medical specialties, although the comparisons were less statistically significant due to the minimal numbers of applicants in some of the less represented clinical specialties. While the NMCRR might have expected a slightly higher number of application from the field of PM&R, those that applied had eventual success rate in the low 20s.

BALANCING ON THE EDGE: POSTURAL CONTROL IN THE ELDERLY

Before leaving the Board, Dr. Meredith Harris discussed her research on postural control. With a background on movement science and special education, she initially studied motor control in children, but more recently focused on postural control and balance in older adults. She developed community relationships that helped her recruit research subjects. Balance requires the successful integration of input from sensory and vestibular systems. In order to monitor postural sway, Dr. Harris developed a belt that emitted sound waves to a fixed array of external monitors. Quite a few elders have undiagnosed vestibular problems and unreported falls. Thus, the need for low-cost, portable devices to help diagnose potential balance problems. Dr. Harris admitted that postural sway would only be predictive of falls that occur due to loss of balance in quiet standing. However, research approaches involving force platforms and accelerometers would not be as portable.

Dr. Harris indicated that 40% of older adults (older than 65 years) are at risk for falls, greatly reducing their independence and carrying significant economic and personal costs. She discussed targeted exercises and education strategies to reduce the incidence of falls in the elderly, but also noted a need to get these approaches into the community and evaluate their effectiveness. Last year she performed a study with 392 community-dwelling elders aged 65-95 years involving an 8-12 week intervention targeting balance, strength, and flexibility. In this study, postural sway measurements were predictive of past falls. The medial-lateral component of sway proved to be more predictive than the anterior-posterior component.

ACKNOWLEDGEMENT OF RETIRING BOARD MEMBERS AND COMMENTS

The NCMRR noted its appreciation for the efforts of the following Board members who are completing their terms with this meeting: Rory Cooper, Meredith Harris, John Kemp, and Sue Swenson. The retiring members were presented with special certificates signed by the NIH Director, and each shared some personal reflections thanking their Board colleagues and NCMRR staff. Sue Swenson was not able to attend the meeting, but sent her comment to the NCMRR by e-mail.

CONNECTING TO OUR CONSTITUENTS

John Kemp provided some thoughts on connecting with researchers and consumers. He described a recent National Summit on Rehabilitation Research, at which researchers and professionals partnered with consumers to ensure a focus on relevancy. He cited the work of Peter Thomas and the NCMRR Coalition to bring more resources for research on people with disabilities, although the organization of these efforts is still being discussed. He also discussed the National Association for Research and Training Centers, however he raised questions about who is driving the disabilities research agenda.

He explained that people with disabilities may not know what is out there or how research could be relevant to their lives. While consumers still felt that research was beneficial and necessary, they had trouble identifying many particulars. Research advances are not getting into the hands of clinicians, policy makers, and the newly disabled and their families. Barriers include limited internet access, language and cultural differences, and a general lack of trust (e.g., who sets and drives the agenda). There were also concerns with marketing and media. Products should be more user-friendly, and research should be discussed in multiple formats with access to simpler abstracts. The dialogue could be improved by the inclusion of more researchers with disabilities and public education on the benefits of research.

Mr. Kemp proposed providing more opportunities to include consumers in research planning, citing the model of National Institute on Disability and Rehabilitation Research (NIDRR) strategic planning activities and workshops on assessment of national needs. He urged more personal connections through Internet sites, such as the dialogues that Dr. Wise Young initiated with SCI patients or the Center for Rehabilitation Research Exchange supported by NIDRR.

PATIENT PRIORITIES AND EMPOWERMENT

Dr. Margaret Stineman, University of Pennsylvania, was invited to discuss her research on patient empowerment. The goal of her work was to apply medical knowledge specifically to help patients achieve full potential for participating in ways most meaningful for them. She has developed a virtual recovery simulation game in which the subject begins with minimal levels of functional independence and sequentially applies resources to build stepwise recovery in selected domains. The simulation helps subjects define their personal priorities and rehabilitative goals, while providing insight into their own personal needs, beliefs, values, and feelings about the meaning of various disabilities. The research tool was based on feature-resource trades-offs in economic theory as well as gaming theories. Specific rehabilitation goals were based on biological and functional staging, causal links between impairment and function, and likely recovery patterns in activities of daily living.

Dr. Stineman found that participation in the game stimulated thoughts and discourse between patients and physicians, while promoting choice, self-direction, and motivation. This discourse was especially important in an environment in which clinical decisions and assistive technologies may have to be decided early on. Simulations performed by therapists and clinicians indicated that they each tended to value most advancement in the specific domains that they are trained to work in. The game also suggested that the priorities of physicians and nurses were remarkably similar. Subsequent adjustments to the game allowed persons with cognitive impairments to participate as well.

NEW BUSINESS AND AGENDA FOR NEXT MEETING

Topics for future Board meetings included a discussion of pediatric critical care, consumer outreach, cancer rehabilitation, electronic submissions to the NIH, and the NCMRR E-Update.

The meeting was adjourned at 11:25 a.m.

Respectfully submitted,

________________________ ________________________
Ralph M. Nitkin, Ph.D.     Date Rory Cooper, Ph.D.    Date
Executive Secretary, NABMRR Chair, NABMRR
Last Updated Date: 11/30/2012
Last Reviewed Date: 11/30/2012
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