Journal Article

F51 Enroll-HD platform data resources

2021

Overview

SummaryEnroll-HD is a clinical research platform that includes at its core a global observational study of Huntington’s Disease (HD) families who are followed annually. Currently, the Enroll-HD study includes over 25,700 participants from 21 countries in Europe, North America, Latin America and Australasia. Enroll-HD provides high quality coded clinical data and biosamples to qualified researchers in the Huntington’s Disease research community via a straightforward request process (https://enroll-hd.org/for-researchers/). Every 1-2 years an easy access Enroll-HD dataset (periodic dataset, PDS), that includes approximately 80% of the variables collected in the study, is prepared and made available to qualified HD researchers. The last Enroll-HD PDS release was made available in December 2020. The risk for participant identification from the PDS is low, but if researchers request any of the remaining 20% of the collected variables, the risk for participant identification may be increased and therefore a specified dataset request must be reviewed and approved by the Enroll-HD Scientific Review Committee (SRC). When approved by the SRC, an SPS dataset can be prepared and released. In addition to Enroll-HD, clinical data can be requested from the studies Registry, HDClarity and TRACK-HD/ON. A large, easy access Registry dataset (RDS) prepared in a format similar to the Enroll-HD PDS 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 Board (SBAC). Datasets are prepared free of charge. In addition to clinical data, the Enroll-HD platform distributes smaller imaging, brain morphometric/volumetric, GWAS, RNAseq, MiSeq, methylation and proteomics datasets collected across a number of HD studies.

• Publisher: BMJ Publishing Group LTD
• Subject: Datasets