CoRDS patient registry a success!

By August 11, 2015Uncategorized

 

Terrific enrollment by ML4 families in our CoRDS patient registry! In 2015, the ML4 Foundation launched our disease-specific patient registry with Sanford CoRDS. This registry contains clinical records by over 27 MLIV families who have taken the time and care to document how the disease manifests itself in their child. The questions, developed by MLIV scientists and with input from MLIV families, cover all aspects of the disease. Families will be asked to update this registry annually. Researchers can now access this de-identified data by contacting CoRDS directly.