Enroll-HD: Celebrating 10 years!

July 25, 2022

Ten years ago today, in Tennessee, the very first participant entered into Enroll-HD. Over the coming year we will be celebrating this important milestone and the remarkable achievements that, as a community, we have made over the last decade. You have been, and continue to be, essential to this progress in Huntington’s disease research.

Enroll-HD was established with three major aims: to support clinical trials, enhance our understanding of Huntington’s disease, and improve clinical care. Thanks to your commitment and dedication, the Enroll-HD community is addressing all three:

Supporting clinical trials: Around half of all participants in current or recently completed HD clinical trials also participate in Enroll-HD. Most of these trials have also made extensive use of the platform infrastructure, including clinical study sites and staff; Enroll-HD sites have made up almost 90% of the sites involved in recent HD clinical trials. These trials would not have been possible without you.

Enhancing understanding of HD: The wealth of data and biosamples you have contributed, collected, or analyzed have led to exciting and significant scientific breakthroughs. These include the development of new classification systems for disease staging in research, advances in biomarker research, the development of assays to measure the huntingtin protein, and the identification of several genetic modifiers of disease onset – critically pointing to new targets for which therapeutics are now being developed.

Improving clinical care: Enroll-HD has worked toward improving clinical care in Huntington’s disease by encouraging regular clinic visits, standardizing assessment tools, training clinicians, and creating and fostering a culture of excellence. Enroll-HD data have also provided important insights into suicidal behaviors and the effect of modifiable environmental factors on disease progression.

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Studies & Trials Supported

Enroll-HD has grown into a community built by families, advocates, healthcare professionals, researchers, and sponsors. Each of you have made an active choice to contribute to this effort with your time, your energy, your resources, and your knowledge. And because of you, new therapeutics are being developed. Because of you, clinical trials are being run faster and smarter. We hope you are proud of everything you have accomplished, and the impact you are making for people with HD and their families worldwide.

You are making a difference.