New Enroll-HD periodic dataset (PDS6) now available!

Jan 9, 2023 (edited Dec 6, 2023)

We are delighted to announce that the eagerly awaited sixth release of the Enroll-HD periodic dataset, PDS6, is now available.

PDS6 contains data from 25,550 Enroll-HD study participants. Data from 95,040 study visits are included, making it one of the largest cohort datasets that is made openly available to researchers.

In addition to the Enroll-HD study data (78,730 visits), PDS6 also contains data from the REGISTRY study (15,292 visits) and additional clinical data collected from other sources (1,018 visits). The number of longitudinal visits from the Enroll-HD study range from one to 11, with REGISTRY visits and additional ad hoc data extending that to over 20 visits for some participants.

The PDS6 Overview document provides an overview of the dataset, sample size, visits, sample characteristics (sociodemographic and clinical), data availability and completeness, and coverage charts.

Due to recent changes to the European Union/United Kingdom General Data Protection Regulations (GDPR), we have altered our dataset request process and are currently no longer able to offer access and download to any data through an electronically signed (e-signed or click-through) data use agreement on the Enroll-HD website. All data access must be obtained through the signing of a paper (or wet signature) data use agreement. Please follow the instructions provided on the Access page of the Enroll-HD website, ensuring you complete the Data and biosamples request form.

Data support documentation for PDS6 has been revised and updated to assist you in understanding and interpreting the data. Please read through this documentation thoroughly.

New this year is the inclusion of CAP score1 and imputed variables for the HD Integrated Staging System (HD-ISS)2, a four-stage evidence-based framework to facilitate clinical research. Additional information on these new variables can be found in the document Understand and Interpret the Data.

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!

Enroll-HD is currently celebrating its 10-year anniversary! We’ve put together interviews with just some of the people who have helped develop the observational study and clinical research platform from its early days to what it is now, giving insight into what Enroll-HD means to them and how it has affected their work and lives.

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

1. Warner JH, et al. J Huntingtons Dis. 2022; 153

2. Tabrizi SJ, et al. Lancet Neurol. 2022; 632