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Found today on NINDS web site:
www.ninds.nih.gov/news_and_events/index.htm

 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.

 Reviewed August 3, 2000

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