REGISTRY is a multi-centre, multi-national, European (with some associate partners wordlwide) observational study of Huntington’s disease sponsored by CHDI, a non-profit organisation that supports a variety of research projects seeking to find treatments for HD.
The aims of REGISTRY are:
- Obtain natural history data on a wide spectrum of individuals affected by HD
- Relate clinical characteristics with genetic factors (‘genetic modifiers’), data derived from the study of body fluids (blood and urine, also called ‘wet biomarkers’) and imaging data (‘dry biomarkers’)
- Expedite identification and recruitment of participants for clinical trials
- Plan for future research studies (observational and interventional trials aimed at better symptom control, and postponing the onset or slowing the progression of HD)
- Develop novel measures to track and/or predict disease onset and progression, as well as improve the existing tools.
Enroll-HD is now replacing Registry in a gobal setting, including centres in North and South America Oceania and with planned extension in China.
The aims of Enroll-HD are:
- to better understand Huntington’s disease as it happens in people , to give us insights into developing new drugs
- to improve the design of clinical trials to give us clear answers more quickly. We want better, smarter, faster clinical trials so that we can move as quickly as possible to find the treatments that work
- to improve clinical care for HD patients by identifying the best clinical practices across all Enroll-HD sites around the world and then working to ensure that all families get that standard of care