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Euro Huntington's disease network [logo]
European HD Registry -

Information about the changes and the use of the new REGISTRY system

As of June 23, 2011 REGISTRY is available in the new version called REGISTRY 3 (R3).

Participant data previously entered at the study sites will automatically be available in the new system.

PLEASE READ:
Before entering new data for each existing partipant please follow the instructions provided. (All prior REGISTRY visits need to be created prior to enrollment into R3.)

Paper documents for the offline data collection are provided in several languages.

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