Enroll-HD study sites: 2012-2022 | Region; recruitment, tenure by CHDI Management / CHDI Foundation

Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease (HD). It is a resource for the entire HD community, including families, clinicians, researchers, advocates, and anyone else who has a connection to or an interest in HD.

Enroll-HD was established with three major aims: to support clinical trials, enhance understanding of Huntington’s disease, and improve clinical care. Thanks to the commitment and dedication of the Enroll-HD community, all three are being addressed. The wealth of data and biosamples collected have led to significant scientific breakthroughs, such as the development of new classification systems for disease staging in research, the development of assays to measure the huntingtin protein, and the identification of several genetic modifiers of disease onset. Enroll-HD has also worked toward improving clinical care in HD by encouraging regular clinic visits, standardizing assessment tools, training clinicians, and creating and fostering a culture of excellence.

Enroll-HD recently celebrated the 10-year anniversary of the very first participant entering the study. To celebrate this important milestone and the achievements that the community has made over the last decade, a series of events and celebrations were held. The Enroll-HD anniversary data visualization – “Enroll-HD study sites: 2012-2022 | Region; recruitment, tenure” - was designed to recognize and acknowledge the efforts of the staff at 183 study sites who have contributed to Enroll-HD during its first 10 years. Each site is listed around the periphery of the image. The radial design depicts three metrics associated with each individual site. Geographical region is illustrated around the circumference by a color-coded star (purple=Europe; yellow=North America; green=Australasia; blue=Latin America). Total recruitment (current as of July 25, 2022) is represented by a filled grey circle, positioned on a radial axis with larger numbers displayed towards the edge of the image (scale range = 1 to 1030). Finally, site tenure - bound by the first time a participant was seen at that site and last/most recent visit - is illustrated by the length of the central rainbow-colored bar (scale range = 0 to 10 years). The Enroll-HD logo is positioned in the center of the image. This visualization was printed on glass and delivered to each site as a token of appreciation for all their work.

Enroll-HD is sponsored by CHDI, a nonprofit biomedical research organization exclusively dedicated to collaboratively developing therapeutics for HD. Enroll-HD would not be possible without the vital contribution of the research participants and their families. For more information on Enroll-HD, please visit www.enroll-HD.org.