PDS7 also contains historic data from the REGISTRY study (15,501 visits) and additional clinical data collected from other sources (1,044 visits).

The number of longitudinal visits from the Enroll-HD study range from one to 13, with REGISTRY visits and additional ad hoc data extending that to over 20 visits for some participants. Visit day at latest Enroll-HD visit ranges from 0 (indicative of baseline visit only) to 4,487 (12.3 years).

The PDS7 overview document provides a synopsis of the dataset, sample size, visits, sample characteristics (sociodemographic and clinical), data availability and completeness, and coverage charts.

Access to the PDS7 dataset requires the signing of a data use agreement (DUA). Please follow the instructions provided on the Access page of the Enroll-HD website; make sure you complete a PDS7 request form and not the standard Data and Biosamples request form.

Data support documentation for PDS7 has been revised and updated to assist you in understanding and interpreting the data. Please read through this documentation thoroughly, and note that the participant identification risk protocol has been revised for this release as detailed in Data quality management and participant privacy.

If you have colleagues who you think might be interested in using this dataset, please feel free to forward this article on to them, we want as many researchers as possible working on Huntington’s disease!

Thank you for your continued commitment to developing therapeutics for Huntington’s disease.