Once you have identified the datasets and/or biosamples you require, please submit the following via email to accountsetup@enroll-hd.org:

• Data and/or Biosample Request form(s)
• Data Security Questionnaire (one per requesting organization)
• Technical and operational security measures (TOMs) of each requesting organization

All requests are reviewed for completeness and feasibility by the Enroll-HD Operations team (1 - 7 days). Requests for specified datasets and non-renewable biosamples also require review and approval by the Scientific Review Committee (SRC; 2 - 8 weeks). 

Once your request is approved, a Data and/or Biosample Use Agreement¹ will need to be signed and executed with your Institution before resources can be provided. On execution of the Use Agreement, biosamples will be shipped and/or datasets will be delivered electronically. Incurred fees² should be received during this process. 

¹Data Use Agreements: Execution of these agreements typically takes 4-6 weeks minimum. Please review these documents with your Institution early in the request process to make sure the terms of use as stated are acceptable, as they are largely non-negotiable. Biosample selection and preparation of specified datasets takes place in parallel to agreement preparation. On execution of the Use Agreement, biosamples will be shipped and/or datasets will be delivered electronically.  

²Fees: Clinical datasets are made available free of charge. There is a cost associated with biosample requests. Participant biosamples are not sold for profit. The cost associated with obtaining biosamples consists of: 1) a biosample fee, 2) a shipping fee, and 3) a handling fee. Biosample fees (i) are applied to partially offset the costs of collecting and storing the requested biosamples, and (ii) give people requesting biosamples a sense of the actual “cost” of their experiments. Shipping and handling fees are direct pass-throughs of project-specific costs and will be provided upon request.