Access Data & Biosamples

To accelerate HD therapeutic research and development, high-quality datasets and biosamples from several studies are made available through the Enroll-HD platform. To explore all available resources, please visit the Clinical Datasets, Biosamples, and Data from Biosamples pages.

If you are a researcher at a recognized research organization, you can request data or biosamples via the process outlined below. You will need institutional authorization to sign data and/or biosample use agreements. Please familiarize yourself with the Clinical Data and Biosample Access Policy.

Enroll-HD is keen to support graduate students and other early-career scientists in their HD research. However, the Data Use Agreement and Biosample Use Agreement required to access data and/or biosamples respectively, must be signed by an individual who is an employee or legal representative permitted by an institution to sign the agreements on the institution’s behalf. Early-career researchers are encouraged to work with their academic advisors and institution to gain access.

To explore our full collection of resources, please visit the Clinical Datasets, Biosamples, and Data from Biosamples pages.

A brief description of your research project and your name will be displayed on the Enroll-HD website.

It will take anywhere from four weeks to several months to fulfill your resource request depending on the type of data or biosamples you request. Estimated timelines are provided below.

Review documentation

Before you submit an access request, carefully review the study and dataset specific information provided to ensure the data/biosamples requested will meet your research needs. If in doubt, contact us.

Be thorough & responsive

Ensure request forms are completed in full and in sufficient detail before submission and respond promptly to questions received from the Operations team and/or the Scientific Review Committee.

Review Use Agreements

Review Data/Biosample Use Agreements with your Research Institution early in the request process to make sure the terms of use as stated are acceptable. The use agreement terms are largely non-negotiable.  Please contact us to request the appropriate Use Agreement(s) for your project. 

Limit number of requests

Limit the number of requests made to those datasets/biosamples that are minimum and sufficient to meet your needs.  Note that each dataset requires a separate Data Use Agreement to be signed. Enhanced identification risk procedures must also be applied when multiple datasets are provided. This procedure will extend delivery time and may result in data suppression or aggregation protocols that would not otherwise be applied.