Critical assessment of variant prioritization methods for rare disease diagnosis within the Rare Genomes Project
Published in medRxiv, 2023
A major obstacle faced by rare disease families is obtaining a genetic diagnosis. The average “diagnostic odyssey” lasts over five years, and causal variants are identified in under 50%. The Rare Genomes Project (RGP) is a direct-to-participant research study on the utility of genome sequencing (GS) for diagnosis and gene discovery. Families are consented for sharing of sequence and phenotype data with researchers, allowing development of a Critical Assessment of Genome Interpretation (CAGI) community challenge, placing variant prioritization models head-to-head in a real-life clinical diagnostic setting.
Recommended citation: Stenton, Sarah L., et al. "Critical assessment of variant prioritization methods for rare disease diagnosis within the Rare Genomes Project." medRxiv (2023).