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Udall Centers Meeting-- Extensive Collaboration Speeds Parkinson's Research

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NINDS Neurodegeneration Group Event Series

September 10-11, 2003
Millennium Hotel, Durham NC


When the National Institute of Neurological Disorders and Stroke (NINDS) awarded the first three Morris K. Udall Centers of Excellence grants in 1998, NINDS staff established a program of yearly investigators meetings in order to encourage and stimulate collaboration. September 9-11, 2003, at the 5th annual meeting of the Centers, it became clear that these efforts are stimulating working partnerships among these highly rated Parkinson's disease (PD) laboratories.

The meeting was co-sponsored by the NINDS, the Duke Morris K. Udall Center of Excellence, the Parkinson Alliance, the Parkinson's Disease Foundation, Beckman Coulter, Inc, and Gentra Systems, Inc., and hosted by the Duke University Udall Center. Staff from ten of the eleven Udall Centers were in attendance. Patient advocates from five voluntary health organizations-the Parkinson Alliance, the Parkinson's Disease Foundation, the Michael J. Fox Foundation, People Living With Parkinson's, and Parkinson's Action Network-also participated along with representatives of six Federal government agencies, including the Veterans Association, the Department of Defense, and five components of the National Institutes of Health (NIH).

The conference opened with an evening reception to meet and greet the participants, and the scientific presentations began in earnest the next morning. Following brief welcoming remarks from Duke principal investigator Jeffery Vance, M.D., Ph.D. and newly-appointed NINDS Director Story Landis, Ph.D., representatives from the Udall Centers provided brief overviews ("data blitzes") of their Center's most exciting work over the past year.

In the afternoon, NINDS program director Diane Murphy, Ph.D. provided an overview of recent highlights from the Institute's PD research program, including meetings on PD clinical criteria, cell biology, deep brain stimulation, imaging, and an upcoming meeting on depression. She also described the new genetic repository for PD, plans for a data-coordinating center, and the recent launch of a clinical trial on neuroprotective drugs for PD. National Institute of Environmental Health (NIEHS) science program administrator Cindy Lawler, Ph.D. spoke about work being conducted at three NIEHS-supported centers to investigate the possible relationship between exposures to environmental agents and Parkinson's disease.

Meeting participants then divided into three groups for the individual breakout sessions on:

  • Clinical/Neuropathological Correlates: By popular demand, this session continued a discussion begun at the previous year's meeting on the overlap seen in both clinical and neuropathological aspects of a variety of neurodegenerative diseases. Participants also discussed a proposed clinical and pathological PD minimum data set and information about the new PD Data Coordinating Center.
  • Genetics: This session focused on new genetic findings, collaborative efforts, the infrastructure needed to assist with genetic discoveries, and the impact and importance of genetics tests as they become clinically available.
  • Non-motor Symptoms: Some of the secondary symptoms people with PD may experience--such as depression, memory loss, sleep disturbances, constipation, and problems with speech, breathing, swallowing, and sexual function--and the needs of research in this area were discussed.

After the breakout sessions, the participants reassembled to hear guest speaker Robert H. Brown, Jr., M.D., D. Phil., Director of the Day Neuromuscular Research Laboratory at Massachusetts General Hospital, speak about mechanisms at work in amyotrophic lateral sclerosis (ALS) that are also likely to occur in PD and other neurodegenerative diseases. Dr. Brown described his pathobiological studies revealing disease pathways not previously considered in ALS and discussed possibilities, and potential dangers, of therapeutic strategies being examined in both ALS and PD. Lessons learned in the study of ALS may prove relevant to PD.

The attendees then boarded shuttles to the Cameron Indoor Stadium for a poster session and refreshments before dinner, generously donated by the meeting's private sponsors, at Duke's new Center for Human Genetics.

The morning of the second day reunited all the participants to hear summaries of the individual breakout sessions. Participants in the Clinical/Neuropathological Correlates session came away with a more unified, but still evolving, framework with which to collect demographic data. The minimum dataset should include the patient's age, age of disease onset, gender, ethnicity, family history of PD (if known), and, in people with mental decline, information such as the age of onset of dementia relative to their motor symptoms. Information about assessments of other signs and syndromes, such as Lewy bodies or multiple systems atrophy, would be useful to have, as well.

The Genetics breakout highlighted the value of sharing linkage studies via resources such as the NINDS repository and PD Mutation Database. Of particular concern to the group was the ethics surrounding genetic testing for a genetically complex disease, an issue that has become more urgent with the recent development of a test for parkin. NINDS agreed to facilitate a meeting, which would include representatives from the Huntington's disease community who have dealt with a similar situation, to more fully explore ways to deal with this complex issue.

The Non-motor Symptoms group highlighted the significant level of sharing among Udall Centers in this under-studied area of research. Participants agreed that current treatments for motor symptoms need to be evaluated for their effect on non-motor symptoms and neurotransmitters. Additional animal investigations of these symptoms are necessary, as are more human imaging studies. Assays should be characterized and validated and testing paradigms developed. New tools to evaluate these symptoms and interactions must be developed. Recognition of the importance of these problems relevant to quality of life must be raised.

The conference closed with a "town hall meeting" discussion of future topics for Udall meetings and PD research directions in general. Bioinformatics, including data sharing, was cited as an important area for next year's agenda. The wealth of data coming from the Human Brain Project and Genset needs to be mined. A presentation on datasets available from the NIH would be helpful.

A suggestion to set aside a time for the Udall investigators to speak directly with the PD patient participants was embraced by researchers and advocates alike. In addition to providing insights into the issues faced by both patients and scientists, such a session could promote solutions or assistance for both groups. For example, it was mentioned that Institutional Review Boards (IRBs) sometimes slow or even halt research deemed important by both scientific and patient communities. Patients, both as participants on IRBs and as members of the community the IRBs are designed to safeguard, could help by making it clear to the IRBs that their job is protection and that, when the IRB goes beyond protection into obstruction, it can actually be harmful to patients. Dr. Landis mentioned that NIH Director Dr. Elias Zerhouni is aware of this problem and has included reengineering clinical investigations in his matrix for the future. The matrix will look at many regulatory processes that, while designed with the best of intentions, can inadvertently impede progress.

In all, the 2003 Udall meeting left most attendees wanting more. In a field that has often been marked by discord and conflict, it is clear that there is a growing recognition of common ground, shared goals, and a new sense of partnership. Carol Walton, Executive Director of the Parkinson Alliance, called the conference "invaluable" and asked to be informed of other areas where the groups can help smooth the way for research. Robin Elliot, Executive Director of the Parkinson's Disease Foundation, told the scientists and NIH staff "As we badger you, you should badger us when there is something we can do to help."

In all, it was apparent that, in the Udall community at least, a remarkable level of collaboration has been reached, to the benefit of the scientists, the Parkinson's disease advocacy community, the agencies supporting and directing the research, and most of all, to the hundreds of thousands of people with Parkinson's disease.

Last updated January 13, 2006