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Euro Huntington's disease network [logo]
European HD REGISTRY -
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As of June 23, 2011 REGISTRY is available in the new version called REGISTRY 3 (R3).

Please read:
  • Before entering new data for each existing participant please follow the instructions provided. (All prior REGISTRY visits need to be created prior to enrollment into R3.)
For the administration of the cognitive tests (Hopkin's Verbal Learning Test; HVLT-R and the Dementia Rating Scale) please contact to receive the test sheets individually for each participant containing the participant's pseudonym or HDID.

In case of questions, issues, comments, you are welcome to see if you can find an answer on our FAQs. In other case, please contact your language area coordinator or the EHDN Central Coordination at
 

Training webinars have been held to inform study site staff about the new features of the REGISTRY 3 system. The slides used for the webinars are available for download.
Please visit our Online Video Training Area, where you can find videos on the assessing of:
  • HD CC
  • Cognitive
  • JHD
  • Columbian Suicidal Severity Rating Scale (CSSRS)
  • Motor
  • Lifestyle

REGISTRY Enrolled its 10,000th Participant

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The REGISTRY study enrolled its 10,000th participant on Sept 18, 2012. This participant was enrolled by site Münster who will receive an iPAD for use in study assessments and other study-related activities. This is a fantastic achievement for the entire network and we would like to thank all sites, HD participants and their families who have contributed to this significant milestone. We are very grateful for your continued support.