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NINDS Establishes Human Genetics Repository

NINDS Establishes Human Genetics Repository

The National Institute of Neurological Disorders and Stroke (NINDS) recently awarded a contract to establish the NINDS Human Genetics Repository-a genetic resource center for human gene discovery for neurological disorders. The purpose of the repository is to develop genetic resources that can be shared by the research community, and to encourage the research efforts of established scientists, junior investigators, and scientists with novel approaches.

Genetic studies of neurological disorders are increasing in number and complexity. During the last decade, many genes that cause single-gene neurological diseases have been identified. For many neurological disorders, however, complex genetics play a role, and progress in identifying genes that affect susceptibility and outcome has been slow. Such disorders may be caused by multiple genes, or by a combination of environmental and genetic factors. Genetic studies of these disorders require a large and diverse sample and accompanying information base. For complex diseases in which single gene effects are modest, sharing is often essential to obtain sample sizes sufficient for statistical analysis. A repository of DNA samples, cell lines and accompanying clinical and pedigree data is an invaluable resource for the neuroscience community.

Sharing eases the rapid replication of new findings, stimulates multidisciplinary research involving clinical and basic scientists, and provides resources for new investigators to enter an area of genetic research. The repository will protect the rights of research participants and ensure that maximum use is made of their contributions by decreasing duplicative data collection efforts. It also clarifies discrepancies among results obtained from different data sets.

The NINDS contract for collecting, storing, characterizing, and distributing biomaterials for the repository was awarded to the Coriell Institute for Medical Research (CIMR). The repository will receive samples and clinical data including pedigree, diagnostic and other information from investigators studying epilepsy, stroke and Parkinson's disease; will processes and store blood samples to prepare DNA samples and viable cell lines, and will distribute cell lines, DNA samples and accompanying clinical diagnostic, pedigree and other data to eligible investigators.

The repository is available for immediate receipt of genetic resources from investigators who wish to submit samples from patients with Parkinson's disease, epilepsy, and stroke; the repository is expected to expand to include other neurological disorders in the future as well. As a service of the repository, investigators who submit samples will in turn receive cell lines and DNA samples on those disorders for no charge and will be eligible for withdrawal of other stored samples (following a waiting period) for a modest fee. Investigators who wish to arrange for submission and cell line creation, or who would like information regarding ongoing sample collections should contact Cynthia Royds, Project Manager at Coriell for the NINDS Repository. For general information about the NINDS repository and to discuss the specific goals of an ongoing or future project in this context, interested persons should contact Dr. Katrina Gwinn-Hardy.

The NINDS is a component of the National Institutes of Health (NIH) in Bethesda, Maryland, and is the nation's primary supporter of biomedical research on the brain and nervous system.

Additional information may be found on the NIH Policy on Availability of Research Results: Publications, Intellectual Property Rights, and Sharing Biomedical Research Resources

Related Information about NINDS Clinical Research
Policies and Regulatory Matters Regarding Human Subjects Research
Clinical Research General Information

Last Modified March 1, 2016