December 18, 2018 – A new data cut from the Enroll-HD observational study, named periodic dataset 4 (PDS4), was made available for download to any interested researcher on December 14, 2018. PDS4 comprises data from 15,301 participants, representing approximately 80% of the total number of participants. The PDS4 file structure is the same as the previous dataset, PDS3 Plus, and contains additional longitudinal data from 3,802 Enroll-HD participants who also took part in the REGISTRY study. There is also clinical data for some participants collected in ad hoc visits prior to their Enroll-HD/REGISTRY study participation. As a guide to the longitudinal nature of PDS4, participants who are only taking part in Enroll-HD have up to 6 visits, those in Enroll-HD plus REGISTRY have up to 20 visits, and those who were part of Enroll-HD and REGISTRY plus ad hoc data have up to 32 visits.
Supporting documentation for PDS4 has been updated, including the Data Handling Manual, the Data Dictionary, and the Annotated CRF. In addition, a Change Log provides a high-level description of the changes made from PDS3 Plus to PDS4. Several user guides are available to help use the data efficiently. Please read through this documentation thoroughly.