Summary Minutes - December 6, 1999

Dr. Rebecca Craik, Board Chair, called the 20th meeting of the National Advisory Board on Medical Rehabilitation Research to order at 8:50 a.m. New members, Drs. Marjorie Anderson, Gloria Eng, and Thomas E. Strax, were welcomed to the Board. The minutes of the May 3-4, 1999 meeting were approved. Dr. Ralph Nitkin was introduced as the new Executive Secretary of the Board; he recently joined the National Center for Medical Rehabilitation Research (NCMRR) after several years in another part of NICHD.

Future Board meetings

May 1-2, 2000
Dec. 4-5, 2000
May 7-8, 2001
Dec. 3-4, 2001

Members Present

Members Absent

Marc A. Buoniconti
Fay W. Whitney

Ex-Officio Members Present

Ex-Officio Members Absent

Board members, both new and continuing, expressed appreciation for the orientation session the previous evening, as well as the lean, accessible format of the orientation booklets. Because the new Director for NCMRR was not yet in place, the Board decided to carry over some of the action items from the previous meeting until the May 2000 meeting. Board members expressed frustration with the lack of adequate logistical support in transporting members from the hotel to the meeting facility. While it is the policy of the National Institute of Health (NIH) to have meetings in NIH facilities whenever possible, special allowances need to be made for the Board. NICHD staff plans to conduct future meetings within the hotel to avoid these continuing logistical problems.

Dr. Craik thanked Yvonne Maddox for her extraordinary efforts in support of medical rehabilitation during her tenure as Acting Director of NCMRR. Despite her other responsibilities within NICHD and NIH, Yvonne provided enthusiastic leadership and special support for NCMRR programs and activities.

REPORT OF THE ACTING NCMRR DIRECTOR

Dr. Yvonne Maddox, Deputy Director of NICHD and Acting Director of NCMRR, provided an update on the search for the new NCMRR Director. The position had been offered to a candidate, but after protracted negotiations over several months the candidate declined for personal reasons. The NICHD offered the position to another top candidate and negotiations are proceeding very rapidly and appear quite positive. There is an excellent chance that a new director will be in place at the start of the year 2000.

Staff changes in NCMRR were also discussed. Dr. Ralph Nitkin recently joined the NCMRR from the Mental Retardation and Developmental Disabilities Branch of NICHD. He will take over the Biological Sciences and Career Development Program, which has been vacant since Dr. Mary Ellen Cheung moved back to NINDS. Dr. Steve Tuel resigned from the Clinical Practices (CP) Program to pursue other opportunities in the bioengineering field. The CP position has been advertised, and the new NCMRR Director may be able to have input on the final selection. In addition, NCMRR has announced a program for Policy Fellowships in Medical Rehabilitation through a joint effort with the American Congress of Rehabilitation Medicine. This fellowship program will provide an opportunity for individuals involved in medical rehabilitation research to spend up to one year working at NIH in the NCMRR. Despite the period of short staffing, the NCMRR has been able to continue functioning through the stalwart efforts of Dr. Louis Quatrano and Debbie Welty. Their long-term commitment to medical rehabilitation activities was acknowledged.

The proposed fiscal year 2000 budget for the NICHD is $858 million, a 14.2 percent increase over 1999. This increase was in a large part due to the efforts of the advocacy groups and industry to effectively represent the importance of biomedical research to government officials. Congressional language and directives to the NICHD in fiscal year 2000 cover a wide range of activities. Of particular interest to NCMRR is language encouraging Physical Disability Infrastructure Grants, including at least one center focused on child services and pediatric trauma. In response to this, the NICHD plans to establish a pediatric trauma program within the NCMRR beginning in fiscal year 2001. This program may be modeled after the neonatal intensive care network program that the NICHD has successfully managed for several years. The NCMRR will be looking to hire an additional scientific administrator to oversee the growing pediatric program.

Dr. Harold Varmus will be leaving as NIH Director at the end of 1999. Dr. Ruth Kirschstein, currently Deputy Director of NIH, will serve as acting Director until a new NIH Director is chosen.

Dr. Maddox urged Board members to examine the "Boundaries Report." This document addresses the organization of Initial Review Groups and Study Sections at NIH and their role in promoting scientific excellence, contributing to the advancement of science, encouraging innovation and risk-taking, exercising fairness, supporting a large workload, and being transparent to scientists and the public. Given that peer-review has a central role in the NIH funding process, the organization of groups that review applications to NCMRR could have an effect on the types of investigator-initiated applications that get funded by NICHD. The Board expressed concern that these review groups should be responsive to the opportunities and special needs of the medical rehabilitation research community. The full text of the Boundaries Report can be found at the following website: www.csr.nih.gov/EVENTS/summary012000.htm

NCMRR CLINICAL TRIALS: PILOT GRANTS AND FUTURE APPLICATIONS

Dr. Ralph Nitkin gave a brief report on the Medical Rehabilitation Clinical Trial Planning Grants. These grants arose from a Request for Application (RFA), (HD-98-001) in early 1998 that solicited applications for small grants (one year at $50,000) to set up the necessary organizational structure for future clinical trials. This may include plans for subject recruitment, piloting protocols, testing procedures, setting up data management and analytical tools, and making collaborative arrangements. In total, 22 applications on such topics as stroke, traumatic brain injury, and spinal cord injury were received, and six were funded. Three of these groups have already gone on to develop full-scale clinical trials in the form of investigator-initiated R01 applications and two others may follow. Although NCMRR already supports a few clinical trials in medical rehabilitation, staff feels this is a useful mechanism for developing the necessary administrative and institutional infrastructure to support additional clinical trials.

REVIEW OF NCMRR RESEARCH ON WOMEN WITH DISABILITIES

Dr. Peg Nosek prepared a videotape presentation with handouts to update the Board on NCMRR-supported studies on women with disabilities. This cohort of studies grew out of an RFA initiated by NCMRR. Early studies in medical rehabilitation were mostly based on treatment of war veterans, and thus, were not particularly sensitive to the needs of disabled women. Dr. Nosek provided evidence that even current research and treatment does not adequately address women's issues in reproductive health, abuse, aging, access to health care, and specific comorbid conditions. She made the following recommendations that future NCMRR research should consider: the development of more appropriate interventions and assessments, specific secondary conditions, dissemination of results, and the education of physicians on health-maintenance needs. Although the videotape format was new to the Board, they appreciated this as a means to hear from an investigator in a discrete and efficient manner, while also providing minimal logistical demands on the presenter. This format would be especially useful when the Board has several presentations to review.

UPDATE ON MEDICAL REHABILITATION RESEARCH NETWORKS

Dr. Ralph Nitkin provided an update on the solicitation for regional networks (RFA HD99-006). The networks are to build a foundation for basic, applied, and clinical research directed at understanding the processes of disablement and functional recovery. Networks in four US regions are to be focal points for collaboration and expansion of the field, increasing research in medical rehabilitation and attracting talented investigators. During the summer, NCMRR staff conducted regional workshops to highlight this solicitation and help potential applicants; this material was later incorporated into a web site. This solicitation has stimulated collaborations and discussions across the rehabilitation research community, which will extend beyond the four networks to be awarded in fiscal year 2000. Although the applications are not due until January 2000, NCMRR has received 12 letters of intent, which include strong applicants in each of the four US regions. The Board raised the possibility of including consumers in the peer-review process. Staff indicated that NIH has been working with this policy in recent years, citing recent success from the National Cancer Institute with the inclusion of non-scientists on peer review panels of their networks. It was agreed that the Medical Rehabilitation Networks would be an excellent opportunity for NICHD to include advocates and consumers in the review process.

NCMRR PROPOSAL FOR AREAS OF EMPHASIS

NCMRR staff presented a proposal (initially termed the Cornerstones Initiative) to define a few specific areas of research that would serve to highlight NCMRR activities in medical rehabilitation, create an identity for the center, and guide future planning activities. The criteria for such areas would be: perceived need and research priority, necessary background and research infrastructure available, representative of current NCMRR activities not the primary focus of other NIH Institutes, and potential focus for periodic workshops. In order to get the discussion going, staff offered four potential topics that would fit these criteria: exercise physiology, pediatric rehabilitation, women and underserved populations, and secondary conditions.

The Board had a lively discussion about this proposal. While they understood the utility of such an approach, they objected to the concept of "cornerstones" because it suggested a long-term commitment that may be inappropriate to the dynamics of the rehabilitation field. There was some question as to whether it was appropriate to highlight some areas at the expense of other areas that are relevant to medical rehabilitation. There was also disagreement about what the appropriate scientific areas should be. The Board supported the overall concept and suggested the more flexible terminology of Areas of Emphasis.

The Board divided into break-out groups to discuss the content of such areas of emphasis, agreeing to use staff's initial proposal as a rough outline. The Board came up with the following four research areas:

1. Exercise, Activity, and Mobility, which would include adapting to altered demands; maintaining muscle mass and joint integrity; increasing and/or preserving endurance and range of activities; cardiovascular and respiratory concerns; weight control, diet, and nutrition; and participation and social integration.
2. Enabling People with Disabilities across the Lifespan, which would include rehabilitative and related behavioral, socialization, self-esteem, and transitional issues in infants, adolescents, adults, and aging individuals.  
3. Gender, Ethnic, and Underserved Populations, which would include unique biological factors, reproductive issues, cultural and socioeconomic factors, and access and support.
4. Secondary Conditions of Disability, which would include prosthetics, orthotics, and assistive technologies; bowel and bladder function; cardiac and pulmonary complications; communication disorders; skin and tissue integrity; immune dysfunction; emotional, psychological, and social issues; pain management; sleep disorders; and morbidity and mortality.

    

PROPOSAL FOR TRANS-NIH CONFERENCE ON MEDICAL REHABILITATION

Dr. Edward Chao, a former NCMRR Board member who is currently working with NCMRR through the Intergovernmental Personnel Act (IPA), presented a plan for trans-NIH meetings to highlight the medical rehabilitation interests of NIH Institutes. Part of NCMRR's mission is to coordinate medical rehabilitation research activities within NIH. The Institutes that have some involvement in medical rehabilitation include: National Institute on Aging, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Center for Research Resources, National Eye Institute, National Heart, Lung and Blood Institute, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Environmental Health Sciences, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute of Nursing Research, and National Center for Complementary and Alternative Medicine. In early discussions, it appears that other Institutes may have different definitions of medical rehabilitation. Trans-NIH meetings would highlight medical rehabilitation research across NIH, review the current science and technologies utilized in medical rehabilitation, and help shape the particular mission and scope of NCMRR. For the first such conference, Dr. Chao proposed focusing on a specific topic, such as bioengineering, which several of the Institutes could rally around. This particular conference could be facilitated by the NIH Bioengineering Consortium (BECON), which has become very active in recent months.

NEW BUSINESS

With some Board members finishing their terms with the May 2000 meeting, there is a need to solicit names for future Board nominations. NCMRR staff is always open to suggestions from current Board members. The final slate of nominations is subject to certain scientific, geographic, and political constraints to make sure that it provides a good cross-section of the research, provider, advocacy, and consumer interests. With Rebecca Craik completing her term as chair, there is also a need to formalize the process of nominating her successor. In past years, the Board has also considered the position of a deputy chair and a designated liaison to the NICHD Advisory Council (often the NCMRR Chair). To facilitate these matters, the Board asked Florence Clark, Chukuka Enwemeka, and Ralph Nitkin to discuss these matters and develop a formal proposal for the May 2000 NCMRR Board meeting.

The NICHD appreciates the continuing activities of NCMRR Board members to advocate for medical rehabilitation research and the NIH in general. The role of the Friends of NICHD, a consortium of scientific, advocacy, and consumer groups that have a particular interest in the programs of NICHD, was discussed. This group works to coordinate activities in the legislative and executive arenas that support NIH. For further information on the Friends, contact the NICHD's legislative liaison, George Gaines at 301-435-3447.

The chairperson adjourned the meeting at 5:00 pm.

Respectfully submitted,