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Enroll-HD Congress 2018

May 25, 2018

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


I had the honor to attend ENROLL HD’s Inaugural International meeting earlier this week to represent HDYO and all the young people in families impacted by HD. I was joined by my colleague/friend, Cat Martin, HDYO’s Executive Director. The conference took place Sunday May 20 through Tuesday May 22 in Quebec City Canada. I was astounded to see over 500 leaders in research attend from around the world to come and collaborate!

I am a current participant of Enroll HD (4-5 years) and have been involved in almost any other study that will take me over the years; COHORT, PREDICT, Exercise HD and multiple other qualitative surveys. Are you a participant in any HD studies? Email me if you want to participate in research, but don’t know where to start or I’d love to learn what research anyone is participating in and how your experience is going.

Part of my obligation of attending is to make sure I relay what I learn at these conferences back to the community so here were my quick takeaways……

  • Enroll HD is much more than just an observational registry. It has transformed into an international platform with multiple research studies and resources all with strategic vision to help find treatments for HD….faster!
  • Recruitment is continuing to be on the rise with over 17,000 participants from over 150 sites and 15 countries. The study is still looking for more participants!!!
  • An Enroll Lite is being rolled out soon to help participants who may be having trouble traveling into clinic because of symptom progression. The visits will either be shorter (45 minutes) or conducted over a phone call (30 minutes)
  • There is an add on, Young Adult Study (HD YAS) being conducted in the UK looking for young adults to participate. There is an optional spinal tap done. As of today 100% of the participants who are in HD YAS have agreed to do spinal tap….you all rock!!!
  • There is still an unexplained variance for symptom onset that has yet to be figured out, but the data from Enroll HD is working to figure this out. These details could help us understand how to potentially delay onset regarding food/drinks we consume to exercise to other variables.
  • From study coordinators, to the principal investigators, to data scientists to HD families, there is a lot to be proud of thus far, but still a lot more to do.
  • Quebec City is a fun little town full of European character that I would highly recommend anyone visit for a weekend. Great food and beautiful scenery!
  • The younger generation in HD families continues to be the focus of the future. Treatment talks continue to be progressing to find treatment options before symptoms ever start occurring. HDYO is working to find new ways for young people to provide their voice into this conversation so the people working on the treatments are working on treatments that we all want. Look for a few new research collaborations to be launched by HDYO soon!!!

Can I answer any questions about the meeting or about the strategy that HDYO plays in this puzzle to find better treatment options? Shoot me an email BJ@HDYO.org


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