Huntington Study Group Announces Launch of LEAD-HD Observational Study

Rochester, NY, July 16, 2024 — The Huntington Study Group® and HSG Clinical Research, Inc. (together, “HSG”) today announce the release of their newest Patient Reported Outcomes (PRO) study, LEAD-HD. This observational study was developed collaboratively with the University of Rochester Center for Health + Technology to gain deeper insight into Longitudinal Endpoints Assessment of Disease Burden in Huntington’s disease (HD).

LEAD-HD is the newest addition to HSG’s online research platform, myHDstory®, which was launched in 2022 to enable adults with HD or prodromal HD to share their personal experiences with the disease from the privacy and comfort of their homes.

The pilot study on the platform, Making HD Voices Heard, was a groundbreaking initiative that successfully engaged individuals with HD who reported that they had never participated in a clinical research study before. In addition, the study cohort achieved higher racial diversity and geographic representation than seen in prior HD studies.

LEAD-HD will expand on the pilot study in a longitudinal design using the Huntington’s Disease-Health Index (HD-HI), the HD-PROP, and measures for both total functional capacity (TFC) and health literacy (HLQ19-Q12). The goals of LEAD-HD are to obtain natural history data in HD, identify demographic characteristics that are associated with faster or slower disease progression, and obtain longitudinal performance metrics of the HD-HI that will facilitate its implementation in future clinical trials.

Dr. Andrew Feigin, HSG Chief Medical Officer said, “Historically, participation in observational studies has required in-person visits with a clinician at a clinical or research site, which creates barriers for many people and decreases participation in this vital form of research. Observational studies help create a better understanding of the natural history of HD, clinically meaningful outcomes for clinical trials, and can provide a resource to enable respondents to participate in future research.”

“LEAD-HD is the first study to use the HD-HI in a direct-to-participant, online platform and we believe the first to examine health literacy among people with HD,” said Jamison Seabury, PhD student in translational biomedical science at the University of Rochester and the Study Principal Investigator. “This is an exciting step for HD research.”