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NINDS Hosts First Parkinson's Disease Implementation Committee Meeting to Establish Priorities for Parkinson's Research

For release: Monday, July 31, 2000

The first meeting of the NINDS Parkinson's Disease Implementation Committee (PDIC) was held on July 31, 2000 at the National Institutes of Health, Neuroscience Center in Rockville, Maryland.

The NIH Parkinson's Disease Research Agenda , published March 2000, identifies needs and opportunities in Parkinson's research. The purpose of the PDIC is to advise NINDS on specific research programs and on how best to coordinate the implementation of the Research Agenda.

The PDIC reviewed the existing programs related to Parkinson's Disease, focusing on those initiated since January of 2000. To facilitate this process, NINDS "coded" grants, solicitations, and other activities according to the Research Agenda and obtained similar input from other components of NIH that are actively engaged in Parkinson's disease research. Clearly, a great deal of research is underway, and all aspects of the plan will be pursued vigorously.

In this meeting, members of the Committee identified several areas that will receive the highest priority in the coming weeks. Discussion focused upon:

  • Medical and Surgical Therapeutics Research

  • Genetic Epidemiology and Gene Expression and Analysis
  • Stem Cell Research
  • Attracting Researchers to Parkinson's Disease
  • Modes of Cooperation with the Private Sector
  • Communicating with the Scientific Community and the Public

The Committee urged NINDS to place a high priority on Phase 1 and Phase 2 clinical trials of potentially useful drugs. The Committee discussed opportunities to work with the Parkinson's Disease Study Group and forming other clinical trials consortia to foster the necessary support structure for Parkinson's disease clinical trials. Key needs are to identify compounds for clinical trials and to foster more effective interactions with industry in order to obtain the identified compounds. NINDS will convene a workshop that will bring together government, academic and industry researchers to work toward identifying compounds and appropriate funding mechanisms. One area of special concern and opportunity is the non-motor aspects of Parkinson's disease, including depression, cognitive problems, sleep problems and autonomic disturbances.

With regard to surgical therapies, NINDS reported that several grant proposals submitted in response to the broad "Deep Brain Stimulation" Request For Research Applications (RFA) will be sent forward to the NINDS October Council for funding approval. NINDS will follow up this broad RFA with separate, targeted solicitations focusing on specific aspects of deep brain stimulation including clinical trials, electrode design, and physiological mechanisms.

The Committee also emphasized the importance of genetics research for understanding Parkinson's disease. This includes the search for new genes, following leads generated by the known Parkinson's related genes, and using the emerging tools for gene expression analysis. One crucial aspect of this, which also relates to environmental research, is to continue work on a web-based Parkinson's Disease Patient and Family Registry. Regulatory issues related to informed consent have delayed progress on the registry. NINDS has initiated discussions with patient groups so that this is a truly cooperative endeavor. Institute staff will also explore means to involve the relevant neurological societies and international groups in this effort.

Stem cell research is also crucial for Parkinson's disease. The NIH Guidelines for Using Human Pluripotent Stem Cells in Research will be in place shortly. There are already proposals coming in for preclinical stem cell therapeutic tests in animal models, which will be essential before studies are attempted in people. NINDS will carefully monitor the need for stem cell repositories and training in stem cell technology, and potential problems related to the evaluation of proposals in this rapidly moving area. Discussions with the FDA are already underway as the science moves toward clinical trials.

The Committee emphasized the importance of attracting both young and established investigators to research on Parkinson's disease. NINDS will move to encourage start-up grants in Parkinson's disease by supplementing existing grants or funding new grants. The private sector already plays an important role in seed grants. Enhancing the coordination among private groups and between these groups and NIH is highly desirable.

Another area of coordination with the private sector will be to form a comprehensive, international congress on Parkinson's Disease in the fall of 2001, similar in scope to the recent World Congress for Alzheimer's Disease.

Tracking progress of the Research Agenda and communicating the needs, opportunities, and ongoing activities with the scientific and lay communities are essential. NINDS is developing a web based program to chart and communicate progress and activities relevant to the Research Agenda that will serve as a model for many future NINDS efforts.

Many other subjects were discussed, including brain banks and the need for more primate studies. These issues will be addressed at future meetings of the PDIC. The current plan is to meet bimonthly.

Participants in the meeting included:

- Gerald Fischbach, M.D., Director, NINDS
- Robin Elliott, Executive Director, Parkinson's Disease Foundation
- Timothy Greenamyre, M.D., Ph.D., Department of Neurology, Emory University
- Jack Griffin, M.D., Department of Neurology, Johns Hopkins University
- Jill Heemskerk, Ph.D., Program Director, Neurodegeneration, NINDS
- John Marler, M.D., Associate Director for Clinical Trials, Neurodegeneration, NINDS
- Jeff Martin, Partner - Shea & Gardner, Senior VP - Saks Incorporated
- Guy McKhann, M.D., Associate Director for Clinical Research, NINDS
- Diane Murphy, Ph.D., Program Director, Neurodegeneration, NINDS
- Eugene Oliver, Ph.D., Program Director, Neurodegeneration, NINDS
- Caroline Tanner, M.D., Ph.D., Director, Clinical Research, The Parkinson's Institute, who participated via video conferencing
- Michael Zigmond, Ph.D., Department of Neurology, University of Pittsburgh
- and other NINDS scientists and staff responsible for various aspects of the Parkinson's research program.

Last Modified August 7, 2009