NIH Review of 5-year PD Research Agenda January 9 and 10, 2002

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On January 9 and 10 I attended an NIH meeting to review the 5-year Parkinson's disease Research Agenda. Over 2 years ago, in November of 1999 I was fortunate to attend the first meeting where Dr. Gerald Fischbach actually had all the institutes and Parkinson organizations in the same room-this was a first.

The tone of the first meeting was more formal and structured. This concept for Parkinson's was unprecedented and everyone was in unchartered waters.

The purpose of that meeting was to really "develop" the agenda and make some assumptions as to where PD research was headed.

The meeting on January 9 and 10 was much more than a "progress report". Everyone realized that PD research had progressed so much in the past 2 years and we really needed to not only "report on progress" from the original agenda; but to actually address the real issues of today. Example: two years ago we weren't talking about gene therapy-today there are now 9 identified genes. The next question is how do we capitalize on this finding? These were the types of questions and issues that were brought to the table.

We now have 11 Udall Centers. These 11 centers are doing research in all areas of the Parkinson's research agenda. They are collaborating with each other and sharing data on various research projects.

We now have a fast track grant program for Parkinson's - the new R21 program. This is a true public/private partnership and between NINDS, other NIH Institutes and the Parkinson's organizations, $11 million is committed over the next 2 years. There was an unprecedented response to the R21 program-NINDS received over 200 applications- and over 50% were new to the field of Parkinson's research.

There is collaboration between NINDS and the Veterans Administration on a clinical trial for Deep Brain Stimulation (DBS).

There are now 13 institutes within the National Institutes of Health that are working on Parkinson's disease research-more collaborative efforts going on within NIH than ever before. There is also a new site for Parkinson's - http://ninds.nih.gov. This is part of the NINDS web site and focuses specifically on Parkinson's.

Do we still have a lot of work to do? Absolutely. Have we made progress in the last 2 years? Absolutely. I wish everyone could have been at the meeting to see the attitude and spirit of cooperation among the NIH institutes as well as Parkinson's organizations.

Whether it is an issue of advocacy; writing that letter to your Congressmen or Senator; trying to recruit patients for clinical trials; encouraging young new researchers to work on Parkinson's or raising funds for research-- we need to make sure we do our part. We need to remain visible-both in Washington DC and in our local communities.

Dr. Gerald Fischbach, former Director of NINDS, said if we had the money and researchers to do the work, we could find the cure for Parkinson's disease by 2005-we still have lots of work to do.

Carol J. Walton
Executive Director

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