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from Mike Claeys, Parkinsons Action Network, [log in to unmask], 800-850-4726, 818 college Ave. Suite C Santa Rosa CA 95404, 202-628-2079, 1001 Pennsylvania Ave. NW, suite 850 North, Washington, DC 20004 The question about "direct" and "related" research is a good one. This is a complicated, and unfortunately somewhat imprecise issue, but one of great importance to the Parkinson's community. "Direct" and "related" are terms the NIH uses to define the relevance of research to a given disease. Given the nature of scientific research, it is pretty much impossible to be absolutely accurate in defining the relation of a particular research project to a particular disease. Since some fairly reliable definition is needed, however, the NIH uses these seemingly simple and self-explanatory terms. In comparing the amounts of NIH funding devoted to various diseases, PAN found that not only did many disease receive more direct funding than Parkinson's, but that every disease looked at received a higher ratio of direct to related funding. For example, breast cancer, general cancer and AIDS research have consistently received over 98% of their total funding as direct funding. For Parkinson's, only about 40% of the total is direct -- as defined by NIH. The recent analysis we have conducted of NIH's FY98 Parkinson's portfolio revealed even more distressing results. Despite the fact that the NIH had categorized 40% of their total as "direct" research, the study found that only 34% of the total funding NIH categorized at Parkinson's is truly focused on Parkinson's. "Focused" research is defined as that in which the principal focus is "the cause, pathogenesis and/or potential therapies or treatments for Parkinson's disease." Again, using this definition, the Parkinson's researchers found that only 34% of the money spent in fiscal year 1997 went for Parkinson's-focused research. The study also found that 27% of the research was "related" to Parkinson's. Related research is defined as that which is likely to have some benefit to finding the cause, pathogenesis and/or potential therapies or treatments for Parkinson's disease. Most disturbing, the study showed that 38% of the research was "non-related," or unlikely to have direct or residual benefit in finding the cause, pathogenesis and/or potential therapies or treatments for Parkinson's disease. We have the list of the 403 grant titles NIH defines as its 1997 Parkinson's research portfolio, and are happy to provide the list along with the findings of the scientific analysis. To request these materials, please contact Michael Claeys at PAN: (800) 850-4726, or email: [log in to unmask] From: "Parkinson's Action Network" <[log in to unmask]> Reply-To: [log in to unmask]