This will be a single-center, single-arm, non-interventional natural history study to evaluate the longitudinal clinical course, functional outcome measures, a…

DNA Repair DisorderCockayne SyndromeXeroderma Pigmentosum+1 more

~Estimated

~$10 – $750

University of MinnesotaNCT05484570

Coordination of Rare Diseases at Sanford

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, …

Rare DisordersUndiagnosed DisordersDisorders of Unknown Prevalence+340 more

The Myelin Disorders Biorepository Project and Global Leukodystrophy Initiative Clinical Trials Network

The Myelin Disorders Biorepository Project (MDBP) seeks to collect and analyze clinical data and biological samples from leukodystrophy patients worldwide to s…

LeukodystrophyWhite Matter DiseaseLeukoencephalopathies+63 more

~Estimated

~$10 – $1,125

Sanford HealthNCT01793168

~Estimated

~$10 – $750

Children's Hospital of PhiladelphiaNCT03047369