Year: 2024
Type: conference-abstract
Abstract: Enroll-HD is a clinical research platform that includes at its core a global observational study of Huntington’s disease (HD) families, followed annually. As of May 1, 2024, 31,622 participants had been recruited from 189 sites in 23 countries spanning Europe, North America, Latin America, Australasia. A total of 21,605 participants are still currently enrolled (i.e., no mortality/end form). To accelerate therapeutic research and development, high-quality clinical data and biosamples from several studies are made available to qualified researchers in the HD research community via the Enroll-HD platform (https://enroll-hd.org/for-researchers/). Periodic releases of the Enroll-HD study dataset, including approximately 80% of the variables collected, are made available every ~2 years; the latest periodic dataset (PDS) - PDS6 - was released in January 2023. Enroll-HD data not included in PDS releases due to identification risk inflation may be obtained through special request, subject to review and approval by the Enroll-HD Scientific Review Committee (SRC) (https://enroll-hd.org/for-researchers/access-data-biosamples/). Clinical datasets from several additional HD studies are also made available free of charge through the Enroll-HD platform, including Registry, HDClarity and TRACK-HD/ON. Brain imaging datasets (e.g., IMAGE-HD, PREDICT-HD) are also available, as well as datasets generated from biosamples (i.e., GWAS, RNAseq, MiSeq, methylation, proteomics) collected across HD studies. A large, final Registry dataset (RDS) has been prepared in a format similar to the Enroll-HD PDS; the RDS can augment the Enroll-HD PDS and thereby increase the total number of participants for modeling purposes. The RDS can be requested by contacting the EHDN Scientific Bioethics Advisory Committee (SBAC).
Author: Enroll-HD Platform Team
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373951