Enroll-HD Monthly News Bulletin – June 2016

June 2016 Monthly News Bulletin

Latest Enroll-HD data release

  • The second Enroll-HD periodic dataset that includes the clinical data from 4146 participants is now available on the Enroll-HD website to any researcher employed at a recognized research institution or company. You can learn more about the types of data and biosamples that are available and the simple and straightforward process to access the Enroll-HD dataset and biosamples. If you’re a principal investigator at an Enroll-HD clinical site then your login details for the EDC system will also allow you to access the periodic dataset.
  • Also on the Enroll-HD website you can find lots of information about how the study is structured and the people who keep it running, from site staff to participants to clinicians to researchers. Please share the link with your colleagues and your participants and check back often for new articles, updates and announcements.
  • Please also check that the information listed on the website for your site is current and correct; please email any corrections to EnrollHD@quintiles.com

Recruitment update – as of June 1st a total of 10,707 participants have been enrolled at 135 sites in 14 countries around the world.

Regional startup and enrollment updates


  • 5,782 participants have been enrolled at 71 active sites in Denmark, Germany, Ireland, Italy, Netherlands, Poland, Spain and the UK.
  • 28 additional European sites that will participate in Enroll-HD now have fully-executed contracts.


  • 4,341 participants have been enrolled at 57 active sites in the US and Canada.
  • o An additional 14 sites have begun the site start-up process.


  • 442 participants have been enrolled at five active sites in Australia and New Zealand.
  • Two additional sites have begun the site start-up process.


  • 142 participants have been enrolled at two sites in Argentina and Chile.
  • Start-up efforts continue at 10 sites in Argentina, Brazil, Chile, and Peru.

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Enroll-HD is a worldwide observational study for Huntington’s disease families. The study has three main goals:

  • To better understand HD as it happens in people to give insight into developing new drugs
  • To improve the design of clinical trials to rapidly provide clear outcomes – better, smarter, faster clinical trials will identify effective treatments as quickly as possible
  • To improve clinical care for HD patients by identifying the best clinical practices across all Enroll-HD sites around the world and ensure that all families receive that standard of care

Enroll-HD is also intended as a clinical research platform that will help coordinate and expedite experimental medicine studies, biomarker development, and clinical assessments for HD.

Visit Enroll-HD.org for more information.