In 2015, the National Institute of Neurological Disorders and Stroke (NINDS) released a funding announcement to support an independent Human Biospecimen and Data Repository for biomarkers research. The cooperative agreement resulting from this funding announcement was awarded to Indiana University and the principal investigator for the repository is Dr. Tatiana Foroud. The new NINDS Human Biospecimen and Data Repository is called BioSEND. Biospecimens previously housed with the Coriell Institute for Medical Research have been transferred to BioSEND, and all biospecimens for PDBP can be queried in the PDBP Data Management Resource under the NINDS Biorepository PDBP Sample Catalog. The purpose of the repository is to receive, process, store, and distribute biospecimens resources that can be shared by the neuroscience research community, and to encourage the research efforts of established scientists, junior investigators, and scientists with novel approaches. This resource is an essential part of the infrastructure for the PDBP and will work closely with the PDBP DMR to assure standardization of biological sample collection, protection of subject privacy and rights, and transparency regarding availability of samples for Parkinson's disease biomarker discovery research.
Biospecimen pooled references have been prepared for plasma and serum, to provide researchers access to shared reference samples that can be used for normalization and standardization across sites, platforms and assays. When individual investigators assay or request access to a large number of PDBP samples (>50), they will be required to measure reference samples at the same time, so that datasets returned to the PDBP data management resource will include reference sample data for measurements of the proposed biomarkers. Should another site (Site 2) seek to replicate an observed biomarker association from an originating site (Site 1), reference samples measured at Sites 1 and 2 will provide a measure of the technical uniformity of measurements across assays and/or sites.
NINDS Human Cell and Data Repository
In 2015, the National Institute of Neurological Disorders and Stroke (NINDS) released a funding announcement to support an independent NINDS Human Cell and Data Repository (NHCDR) for basic science research. The cooperative agreement resulting from this funding announcement was awarded to Rutgers University and the principal investigator is Dr. Jay Tischfield. All cell lines (fibroblasts and induced pluripotent stem cell (iPSC) lines) previously housed with the Coriell Institute for Medical Research have been transferred to the NHCDR and all cell lines are available through the NHCDR catalog. New to the NHCDR are gene edited lines for the following mutations: SCNA A53T, LRRK2 G2019S, PINK1 I368N, MAPT P301L, GBA E326K, GBA N370S, and SOD1 H44R. The gene edited lines were developed from iPSCs derived from patients with the following diagnoses: Parkinson’s disease, Frontotemporal Degeneration, Amyotrophic Lateral Sclerosis.
Interested in obtaining biospecimens?
All investigators interested in obtaining biospecimens from an NINDS biorepository must do so by submitting an order request though the Data Management Resource.