Parkinson's Groups Unite to Increase Awareness and Participation in Clinical Research

The Parkinson Alliance has joined seven leading Parkinson's groups and the National Institute of Neurological Disorders and Stroke (NINDS) to lead a nationwide effort to accelerate the development of new treatments for Parkinson's by increasing awareness and participation of the patient community in clinical research.

The campaign which is being called Advancing Parkinson's Therapies (APT) was initiated because an increasing number of new therapies for Parkinson's will soon need to be tested in clinical research and because current levels of participation are insufficient. This disparity between the projected need for the number of patients in trials and the actual level of participation could result in severe delays in the availability of new treatments. Currently an estimated 5,000 people with Parkinson's are participating in clinical research, and this number falls far short of the 10,000-15,000 participants that researchers anticipate they will need to efficiently conduct clinical studies in the next two-to-three years.

APT will work to address this issue by providing better access to information on Parkinson's clinical trials, by increasing awareness among patient and physician audiences of trials that are actively seeking patients and by educating patient communities on the value of clinical research. "The NINDS is delighted that the Parkinson's groups have come together to support the efforts of scientists conducting clinical research. Patient awareness and willingness to volunteer are key components in the search for new, more effective therapies for Parkinson's patients. The Parkinson's advocacy community is well-positioned to get the word out and help answer the many questions patients have about what it means to be a volunteer in a research study" said Marian Emr, NINDS Director of Communications and Public Liaison.

Among the plans to achieve campaign goals will be the launch of a new website dedicated to Parkinson's clinical trials, www.pdtrials.org (launch date, July 15, 2004), and the availability of patient educational brochures and bi-annual bulletin on trials seeking patients. In addition, resource kits will be available for support groups and other independent Parkinson's groups.

The following organizations have pledged to unite to support the effort: the American Parkinson Disease Association, the Michael J. Fox Foundation for Parkinson's Research, the Kinetics Foundation, the National Parkinson Foundation, the Parkinson's Action Network, and the Parkinson Alliance, spearheaded by the Parkinson's Disease Foundation.