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I25 Registry: status update
  1. European Huntington’s Disease Network, on behalf of REGISTRY investigators and participants

Abstract

REGISTRY was initiated in 2004, and is the largest study of HD to date, which annually collects standardised clinical data and biospecimens on individuals affected by HD, HD family members and controls.

This observational, prospective, longitudinal, multi-national, multi-centre cohort study of Huntington’s disease (HD) demonstrates the successful collaboration of 161 expert HD clinical sites across 17 European countries. Over 13,000 participants have contributed clinical phenotypical data, with more than 10,000 participants additionally donating biosamples for use in large-scale genetic modifier and biomarker studies.

Study metrics of the REGISTRY cohort are summarised, including general and HD-specific demographics and an overview of standard assessment and longitudinal data.

REGISTRY has been highly successful in establishing a well-characterised European-based HD cohort. The study has expedited implementation and recruitment for clinical trials and is an invaluable resource for clinical and genetic modifier studies. REGISTRY data has been a solid basis for research, delivering more than 50 scientific publications.

Since 2013, sites and participants have been transitioning from REGISTRY to Enroll-HD (www.enroll-hd.org), a global study using an improved protocol and operating procedures. Around 50% of REGISTRY sites are now recruiting to Enroll-HD.

  • REGISTRY
  • EHDN

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