Access Data and BioSamples

Access Data, Biosamples and Clinical Rater Training

December 14th – Fourth Periodic Dataset Now Available

The fourth Enroll-HD periodic dataset (PDS) was extracted from the database on October 31, 2018 and made available on December 14, 2018. This PDS, called PDS4, comprises the clinical data from 15,301 participants, including 3,802 from the European REGISTRY study that preceded Enroll-HD. See below to either log in or apply for a clinical access account.

Data sharing is essential to developing therapeutics for Huntington’s disease. Enroll-HD is a clinical research platform intended to accelerate progress towards the development of therapeutics that will benefit HD-affected individuals. Towards that goal, the longitudinal, code-protected clinical data and renewable and non-renewable biosamples collected from Enroll-HD participants are made available to any interested researcher working at a recognized research institution through a straightforward process. The wide availability of these resources aims to energize HD research and encourage a broad variety of ideas and projects.

Researchers requesting data and biosamples will be asked to sign the respective agreements governing access and use of these resources which include requirements to uphold privacy.

For a description of the types of data and biosamples available, click here.

For questions please contact Biosamples@Enroll-HD.org

1Establish your eligibility.

To access data and biosamples you must be a researcher employed by a recognized academic institution, company or nonprofit organization and apply for an Enroll-HD clinical access account.

2Employer/Institution signs respective use agreement.

To access the Enroll-HD clinical data and biosamples, your employer/institution will need to complete (online or download) the respective use agreements. In addition to other terms, these documents require you to comply with the publication policy.

3Provide a brief description of your project for posting on this website.

To encourage collaborative projects and reduce redundancy among researchers you will be asked to provide a brief description (50 – 200 words) of your project – this will be posted along with your name and affiliation.

4Download data or complete biosample request form.

The periodic datasets will be available for immediate download, along with several accompanying documents to aid you in you use of the data. Specified datasets and biosamples (renewable and non-renewable) require completion of specific forms, will take additional time to process, and may require Scientific Publication Review Committee approval.

Enroll-HD Clinical Sites

If you are the principal investigator of a participating Enroll-HD clinical site and have access to the Electronic Data Capture (EDC) system then you already have an account. Use your EDC username and password to login.