Finding Tics in the Community without putting a doctor on every corner

Grant Type
Grant Year
Institution Location
Institution Organization Name
Washington University
Investigators Name
Black, Kevin, MD

Certain important questions about Tourette Syndrome (TS) can be answered only in large-scale population studies. One example is whether people of different racial backgrounds are more or less likely to develop TS. Another example is identifying which people with first-ever tics, actually go on to develop TS. The difficulty is that we are dealing with two competing needs. On the one hand, TS diagnosis requires expert assessment. We know from past research that even with careful survey studies investigators misdiagnose some people with tics. On the other hand, it is impractical and extremely costly for TS experts to examine thousands of subjects. The proposed study is based on the premise that after an interviewer shows them a brief video about tics, survey respondents will respond reasonably accurately about tics in themselves or their children. We plan to develop and test a multimedia-enhanced screening interview designed for specially trained lay interviewers to use in large population-based samples, e.g. door-to-door surveys. Provisionally we are calling this interview the Tourette and Tic Disorder Screen (TTDS). We will also develop instruction materials for the lay interviewers and initially train at least two interviewers to a high degree of proficiency. To test the reliability of the TTDS, the interviewers will apply it to 200 different subjects. Unbeknown to the interviewers, 80 of the subjects will be known patients of Dr. Black or his colleagues. Dr. Black will also examine a random sample of the remaining 120 subjects. In this way we will find out whether the lay interviewers make the same diagnosis as the physician. A strength of this proposal is that it can be applied to new resources at our institution thus enabling us to recruit subjects from minority population groups. The primary aim of this project is to generate pilot data for future NIH applications. However, this study will also aid in recruitment for our current NIH-funded research and perhaps produce a new tool that we can share with other TS researchers. Kevin J. Black, M.D., Catherine Woodstock Striley, Ph.D., MSW, LCSW, ACSW, MPE Washington University School of Medicine, St. Louis, MO Award: $68,008 Tourette Association of America Inc. – Research Grant Award 2008-2009