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HELP 4 HD with Dr. LaVonne Goodman

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Our special guest tonight is Dr. LaVonne Goodman, a “mostly retired” internist and patient advocate who decided to help a Seattle clinic recruit patients with Huntington’s Disease (HD) and was wildly successfully at it. Her secret, she says, is having a personal relationship with many, many patients. Her husband died of HD at age 36. Since then she has seen HD patients and led support groups, building relationships as a friend to families dealing with HD. She has kept a close watch on the clinical studies field, but all studies were observational in nature and not designed to alter the course of their disease or symptoms. Then in 2010, she heard that the first compound designed for motor improvement in HD patients was entering phase II trials. After realizing the Seattle area was not involved, she pressed the Huntington’s Study Group who connected her with a Colorado physician who had just joined Evergreen Neuroscience Institute in Seattle. The two decided to work together on the trial with Goodman handling recruiting. Because of her long standing relationships with HD families, they were literally waiting at the door. Evergreen emerged as the third best recruiter for the trial, among very established centers. She emphasizes, the personal angle is key. Clinical research literacy is low because people don’t know much about clinical trials, they are afraid of them. She stresses that the conversation about clinical trials should come from someone they trust in their community, not a lecture from a stranger. Goodman is staying active in recruiting for studies and is currently working on amassing a cohort to be used for a registry for biomarker studies. She says it is her passion to try to speed that along because there was nothing for the last generation, but for this generation, it could be different. Her website is http://hddrugworks.org

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