Overview
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.
Once you have identified the datasets and/or biosamples you require, please submit the following via email to accountsetup@enroll-hd.org:
- Data and biosamples request form
- Data Security Questionnaire (one per requesting organization)
- Technical and operational security measures (TOMs) of each requesting organization
When drafting a project description to request biosamples, please carefully consider and address the following points:
- Purpose: The purpose of the project must be clearly presented. The SRC must understand whether the samples you are requesting are appropriate to meet the aims of your research. For example, will the project look for significant changes between disease stages, or study biological variability over time?
- Novelty: What are the criteria for introducing new assays/methodologies, especially in a competitive space?
- Sample size: The sample size must be appropriately justified in the project description. If no data are available to perform a power calculation, this must be mentioned.
- SAP: A brief description of the statistical analysis plan must be provided.
- Assay validation: All applicants should first validate their single target assay(s) with non-HD biofluids to provide standard assay parameters (e.g., biological Coefficient of Variations for power calculation, etc.) for the specific biological matrix of interest, or have relevant publications to support their methodology and approach. This information should be included in the request application.
- Consideration of prior proteomics results: For projects aiming to study a specific protein, previous proteomics results should be considered. If the protein has failed to show HD associations in any of the current proteomic projects, then applicants should explain if the proposed protein-specific assay method is substantially different from those previously used, and whether there is a reason to believe that the assay may be more sensitive for measuring the protein in question.
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 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.
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.
How to expedite your request
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.