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Impact Of Biobanks On Research Outcomes In Rare Diseases: A Systematic Review, Monique Garcia, Jenny Downs, Alyce Russell, Wei Wang
Impact Of Biobanks On Research Outcomes In Rare Diseases: A Systematic Review, Monique Garcia, Jenny Downs, Alyce Russell, Wei Wang
Research outputs 2014 to 2021
BACKGROUND: Alleviating the burden of rare diseases requires research into new diagnostic and therapeutic strategies. We undertook a systematic review to identify and compare the impact of stand-alone registries, registries with biobanks, and rare disease biobanks on research outcomes in rare diseases.
METHODS: A systematic review and meta-aggregation was conducted using the preferred reporting items for systematic reviews and meta-analyses (the PRISMA statement). English language publications were sourced from PubMed, Medline, Scopus, and Web of Science. Original research papers that reported clinical, epidemiological, basic or translational research findings derived from data contained in stand-alone registries, registries with biobanks, …