Susan Perlman, MD
Los Angeles, CA
Web-based National Ataxia Database The National Ataxia Registry, the National Ataxia Database, and the Ataxia Tissue Donation Program were formed to provide the infrastructure for clinical research in the ataxic disorders. They enabled ataxia researchers to notify ataxia patients of upcoming research projects, to store and analyze data from those projects, and to examine tissues from ataxia patients to find out how ataxia develops and how the body responds to it. The web-based National Ataxia Database is currently housed on the UCLA computer servers, and over the years since its development, has provided natural history database support to the UCLA Ataxia Clinic, as well as to the Ataxia Clinic at John Hopkins University. Other "Ataxiologists" in California, Arizona, Nevada, and Colorado have expressed interest in using it as well. It has begun to provide a platform to support and join specialists in clinical care and clinical research of ataxia. It will ultimately assist all members of the Ataxia Clinical Research Consortium in future collaborative endeavors in clinical research and in setting standards for clinical care. Following the end of funding from the National Institutes of Health for the Rare Disease Network, with of the help of the NAF "bridge" grant, we were able to continue to import the existing data of the natural history study into the National Ataxia Database. This allowed us to continue enrollment and follow-up of participants in this important study of SCA l , 2, 3, and 6. Data collection will begin on participants with SCA 7, 8, and 10. There are now 13 sites contributing to this project, and six more will be added. Close to 500 participants have been enrolled and are pursuing natural history examinations and banking of specimens. The National Ataxia Database will also be open for ataxia researchers to "bank" other clinical data collected, either in the individual's private data docks (not accessible to other ataxia researchers) or in data docks shared by several researchers. (e.g., for a proposed project to look at coded clinical data on people with sporadic ataxia). Templates will be added for scales to measure fatigue, dizziness, cognition, and neuropsychiatric symptoms. The National Ataxia Database is an essential tool for the Clinical Research Consortium for the Study of Cerebellar Ataxia.