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.
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.
NINDS Human Cell and Data Repository
The NINDS Human Cell and Data Repository (NHCDR) was established in 2015 as a resource for investigators utilizing patient derived fibroblasts and induced pluripotent stem cells (iPSCs) to study neurological disorders. The cooperative agreement resulting from this funding announcement was awarded to Rutgers University and the principal investigator is Dr. Jay Tischfield and co-investigator Dr. Jennifer Moore. NHCDR supports the neurological disease research community by 1) maintaining well-characterized iPSC and source cells (i.e. fibroblasts or PBMCs), 2) selectively deriving, expanding, and where appropriate, editing high quality iPSC lines; 3) associating available lines with de-identified demographic, genetic and clinical data from participants with neurological disorders and neurologically normal individuals, and 4) broadly sharing these resources with the scientific community. There are cell lines available to the scientific community from a number of neurological disorders including Alzheimer’s Disease, Amyotrophic Lateral Sclerosis, Dystonia, Frontotemporal Dementia, Huntington’s Disease, Lewy Body Dementia, Myotonic Dystrophy, Parkinson’s Disease and Parkinsonism, Spinal Bulbar Muscular Atrophy, Spinal Muscular Atrophy. The repository currently has generated iPSC lines (as well as gene edited lines) for the following mutations: SCNA A53T, LRRK2 G2019S, PINK1 I368N, MAPT P301L, GBA E326K, GBA N370S, FUS H517Q and SOD1 H44R. Lewy Body Dementia as well as a subset of Parkinson’s disease iPSC lines were developed using PBMCs collected from PDBP participants.