What is REGISTRY?

REGISTRY is a multi-centre, multi-national observational study with no experimental treatment. It forms part of the Huntington Project, a worldwide collaboration dedicated to finding treatments that make a difference for HD. REGISTRY is sponsored by the High Q Foundation, a non-profit organisation that supports a variety of research projects seeking to find treatments for HD.

What are the aims of REGISTRY?

A major milestone for REGISTRY will be to recruit one third (approximately 10,000 individuals) of the European HD population by 2010. The aims of REGISTRY are to:

• 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.

Why is REGISTRY important?

REGISTRY’s strength lies in its collaborative approach, providing an extensive clinical and biological data repository to facilitate studies that could not otherwise have been possible.

Are there any links to other projects (EHDN- or worldwide)?

Yes, REGISTRY operates alongside a number of multi-centre, multi-national HD projects including TRACK-HD and PREDICT-HD. EHDN also maintains strong collaborative links with the US-based Huntington Study Group (HSG) .

What are the benefits of participating in REGISTRY?

Participation in this study will enable deeper understanding about the natural course of HD and which factors other than the HD gene influence its onset, presentation and course. For many individuals, it will provide an opportunity to enrol in other studies and interventional trials.

What types of studies are performed?

• Interventional trials
• Identification of genetic, biological and environmental modifiers of HD
• Identification of more accurate and reliable biomarkers of HD
• Review of medications used to manage the symptoms of HD
• Evaluation of comorbid conditions that may or may not be common in HD
• Study of rarer HD populations (e.g. juvenile HD).

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