CURE SYNGAP1 announces $111,960 investment in RARE-X partnership to advance ProMMIS patient-reported outcome measure data collection – PR46

CURE SYNGAP1 is proud to announce a strategic investment of $111,960 in RARE-X to accelerate the collection of high-quality Patient-Reported Outcome measures (PROs) for the ProMMiS Natural History Study. This multi-year funding ensures that the patient voice is rigorously captured and integrated into the clinical development pipeline for SYNGAP1-Related Disorders.

Funding to RARE-X (part of Global Genes) provides a GDPR-compliant digital data platform, licensing and implementation of validated surveys to measure participant progress, ongoing coordination with clinical sites, and a safe data pipeline of results to be sent to the Data Coordination Center for the SYNGAP1 ProMMiS Natural History Study.

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