Research Frontiers
Part 2

Community Outreach

Besides seeing patients, the Center is especially active in reaching out to the greater HD community. Since the Center does not have its own HD facility, the team must attempt to reach “outside the clinic.” It is very difficult to find the type of specialized care offered at Washington University in the surrounding rural areas. Melinda and her coworkers therefore focus on extending care and education to these underserved areas. They travel to nursing homes to teach caregivers about HD and how to more effectively care for their patients. They also provide family and community outreach by placing ads in local papers and on local radio stations in rural areas, as well as by creating support groups to target these otherwise isolated populations.

Melinda explained that Dr. Joel Perlmutter, the Center Director, recognizes that the main impact of HD is psychosocial, that it can impede the socioeconomic development of families with this disease. This problem is especially devastating in farming communities with a tradition of large families. Large family sizes may result in concentrated clusters of HD, such as those found in southern Illinois.

Last Modified: 02/06/2005

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