The European Huntington’s disease Network’s (EHDN) REGISTRY study is an invaluable resource for scientists and researchers. REGISTRY is a clinical research platform that can expedite experimental medicine studies, biomarker development, and refine clinical assessments for HD. Researchers can apply to use this high quality, curated clinical data collected on more than 13,000 participants. In addition more than 10000 biosamples have been donated and there is 5 years of longitudinal data on 62% of participants.
REGISTRY core assessments comprise demographics, UHDRS Motor, Function and Behaviour, medical history, medication, comorbid conditions, HD Clinical Characteristics, local laboratory CAG repeat, cognitive assessments, with additional clinical assessments and/or biosamples (blood and urine) collected as an optional extended battery.
Access to the clinical database and to biosamples are regulated by the policies of EHDN (www.euro-hd.net/html/network/project/constitution/doc) and open to any scientist interested in HD research. As REGISTRY sites are transitioned to Enroll-HD, a global follow-up study of REGISTRY with improved protocol and operating procedures, the collected data are going to be prepared as a legacy database to be accessed for data mining projects.