The Neurogenetics Branch (NGB) within the National Institute of Neurological Disorders and Stroke (NINDS) is conducting a study to evaluate patients with hereditary spastic paraplegia types 3A, 4 and 31. The objective of this study is to understand disease progression in these closely related forms of hereditary spastic paraplegia using validated rating scales. We also hope to develop bio- markers that could be used in future treatment trials.
1. Age 7 or older
2. Genetic diagnosis of SPG3A, SPG4, or SPG31
3. Willing to travel to the NIH, located in Bethesda
1. Neurological exam
2. Blood work
3. Skin biopsy (optional)
Alice B. Schindler, MS, CGC
Genetic Counselor/Research Coordinator
10 Center Drive 10/5s-219
Bethesda, MD 20892-1671
DON'T MISS OUT! Come hear the very latest about what is known about and what hope we have for a cure for HSP and PLS. Also, you will love meeting and learning from over one hundred other people with these conditions. Make friends, learn from others about how to cope, the best tools and just have a great time.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
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