Udall Centers Meeting—Expediting Parkinson’s Disease Research Opportunities Through Collaboration

Now in their 6th year, the Morris K. Udall Centers of Excellence continue to pursue cutting edge research on a variety of topics related to Parkinson's disease (PD), including the identification of genes that may be involved in PD, testing potentially useful drug candidates and other therapeutics, developing better animal models, and determining the disease's underlying pathways. The success of these basic investigations and their relevance to human disease has the Centers poised to "translate" their findings into clinical research studies.

This progress continues to be enhanced by annual meetings at which investigators from each Center share their facility's most promising research, often before the results are published in the scientific literature. This process has led to a number of successful collaborations among the Udall scientists. This year's meeting was hosted by the National Institute of Neurological Disorders and Stroke (NINDS), which funds the Centers, at the Renaissance Washington Hotel in Washington, D.C. on November 30- December 2, 2004. NINDS is a component of the National Institutes of Health (NIH).

Today, genetic investigations play a major part in Parkinson's disease research. "Ten years ago, scientists hunting for the causes of Parkinson's disease were focused primarily on the environment. Then, in 1995, an NIH-sponsored workshop resulted in an incredibly effective collaboration between a research group that had collected a large kindred with Parkinson's patients and an outstanding genetics group that resulted in the discovery of the first gene. Because of that meeting and collaboration, genetic studies have become one of the most significant areas in Parkinson's research," observed NINDS Director Story C. Landis, Ph.D. "I'm delighted that this atmosphere of sharing is continuing to benefit Parkinson's research," she continued, referring to several collaborations among Udall scientists reported at the meeting and the very positive interactions between the Parkinson's voluntary groups.

The meeting began with a brief reception the evening of November 30. The next day, representatives from the Centers offered presentations on work being done in their facilities. The morning's talks, which focused on discoveries adding to our understanding of Parkinson's disease, included such diverse topics as genetics, molecular mechanisms, epidemiology, and animal models. Evolving knowledge of the circuits involved in Parkinson's was described. Investigators described research on the role of Lewy bodies, which may prove to be protective, and neurotoxins that may be involved in the cause of Parkinson's.

A working lunch was followed by more talks, this time related to the development of new treatments. The presentations ranged from pharmaceutical studies of GDNF to surgical approaches, such as deep brain stimulation, to exercise. Research on stem and encapsulated cells were presented. Alternative delivery methods, such as pumps, and treatments for symptoms, such as sleep disorders, were also addressed. Other talks described efforts to develop biomarkers that would be inexpensive and easy to administer, yet able to detect Parkinson's early in the disease course. The day ended with a dinner hosted by the voluntary agencies.

The next day, attendees divided into three breakout sessions on brain banking, emerging technologies, and animal models.

At the break out session on brain banking for PD, participants focused on the needs for coordination and infrastructure. Suggestions were made as to how the NIH could help by building an informational webpage that could serve the needs of both patients/families and physicians/researchers. It was agreed that standards, as developed in the minimum data set for PD, should be adhered to and that the Parkinson's Disease Data Organizing Center (PD-DOC) would be an appropriate venue for coordination. It was also suggested that groups outside of the Udall Centers that have successful PD brain banking programs should be included.

The well-attended emerging technologies session discussed promising technologies that could be developed and used to accelerate research progress in Parkinson's disease. The discussions were broadly based with an emphasis on surfacing new ides. Technologies discussed include: RNAi, Photo Laser Scanning Micro-Cellular imaging, targeted drug delivery, long-term recording and chemical sensor probes, susceptibility genes, protein arrays, high throughput protein assays, nanotechnology, informatics for sharing and management of data (PD- DOC), imaging, biomarkers, neuroprosthetics, and trophic factors.

The third breakout session focused on animal models of PD. Models discussed include flies, worms, fish, rodents, and non-human primates. There was a discussion of the utility of finding an "ideal" animal model of PD, but the participants felt strongly that it would not be productive to focus on finding such a model because some models may be better suited to answer some research questions than others. Participants agreed that the evaluation of therapies in non-human primates continues to play an important role in translational research in PD. It was recommended that guidelines, or standards, for the use of the various models be published on the web. NIH policy on the sharing of model organisms, so critical to progress in PD research, was reviewed and the lack of availability of some models discussed.

In the afternoon, the participants came together to further discuss the PD-DOC. The PD-DOC representatives gave a brief overview of how the data organizing center is intended to work, and also took suggestions and commentary from the floor as to what some of the most important data elements should be. There was also discussion and summarization of the recommendations from the breakout sessions. At the close of the meeting, representatives of the voluntary agencies were invited to join NINDS staff for an overview of the National Institutes of Health Parkinson's disease portfolio.

A number of organizations provided additional support for the Udall meeting, including The Parkinson Alliance, the American Parkinson Disease Association, the Michael J. Fox Foundation for Parkinson's Research, the National Parkinson Foundation, the Parkinson's Disease Foundation, and People Living With Parkinson's. The NINDS is grateful for their generous contributions.