Access Data and BioSamples

Access Data and Biosamples

New HDClarity Periodic Dataset NOW AVAILABLE! \| PDS2 The second HDClarity periodic dataset (PDS2) was extracted on April 1, 2021 and made available on June 4, 2021. HDClarity PDS2 contains data from 457 HDClarity participants. To access the dataset please contact us. The updated HDClarity dataset documentation is available here.

New HDClarity Periodic Dataset NOW AVAILABLE! | PDS2

The second HDClarity periodic dataset (PDS2) was extracted on April 1, 2021 and made available on June 4, 2021.

HDClarity PDS2 contains data from 457 HDClarity participants.

To access the dataset please contact us. The updated HDClarity dataset documentation is available here.

New Enroll-HD Periodic Dataset NOW AVAILABLE! \| PDS5 The fifth Enroll-HD periodic dataset (PDS5) was extracted from the Enroll-HD database on October 31, 2020 and made available on December 18, 2020. PDS5 contains data from 21,116 Enroll-HD participants and 71,682 visits (Enroll-HD visits = 55,975, REGISTRY visits = 14,737, Adhoc clinical visits = 970). A full overview of PDS5 is now available.

New Enroll-HD Periodic Dataset NOW AVAILABLE! | PDS5

The fifth Enroll-HD periodic dataset (PDS5) was extracted from the Enroll-HD database on October 31, 2020 and made available on December 18, 2020.

PDS5 contains data from 21,116 Enroll-HD participants and 71,682 visits (Enroll-HD visits = 55,975, REGISTRY visits = 14,737, Adhoc clinical visits = 970). A full overview of PDS5 is now available.

To accelerate HD therapeutic research & development, the Enroll-HD clinical research platform provides any verified researcher access to high-quality datasets and biosamples from the following HD clinical research studies: Enroll-HD, HDClarity, and TRACK-HD/Track-On HD.

Explore Data and Biosamples to learn more about these studies and the resources available.

If you are a researcher at a recognized research organization, you can open an account and 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.

There is no charge for access to the datasets. To cover some of our shipping & handling costs (and ensure that they will actually be used in research) there are fees for biosamples, dependent on the type of biosample and the amount requested.

It will take anywhere from two days to several months to fulfill your resource request depending on the type of data or biosamples you request. Estimated timelines are in the figure below.

1Determine which data or biosamples you require Browse the available datasets and biosample collections.		2Establish 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 access account. *If you only need access to Enroll-HD PDS5, you can now skip directly to step 5.2*. If you only need access to HDClarity PDS2 or TRACK-HD/Track-ON data, please contact us (if you need access to biosamples then please fill in a Biosample Request Form (universal) and follow submission instructions on the form).

1Determine which data or biosamples you require

Browse the available datasets and biosample collections.

2Establish 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 access account.

If you only need access to Enroll-HD PDS5, you can now skip directly to step 5.2.

If you only need access to HDClarity PDS2 or TRACK-HD/Track-ON data, please contact us (if you need access to biosamples then please fill in a Biosample Request Form (universal) and follow submission instructions on the form).

3Submit data or biosample request form Download data or biosample request forms and submit the forms by email (details on the request form).		4Review and approval of request All request forms are reviewed by the Enroll-HD Operations Team. If form is incomplete/unclear it will be sent back to you to update. Requests for non-renewable bio-samples or specified datasets are reviewed by the Scientific Review Committee (SRC) in the order received; these have a longer process time.

3Submit data or biosample request form

Download data or biosample request forms and submit the forms by email (details on the request form).

4Review and approval of request

All request forms are reviewed by the Enroll-HD Operations Team. If form is incomplete/unclear it will be sent back to you to update.

Requests for non-renewable bio-samples or specified datasets are reviewed by the Scientific Review Committee (SRC) in the order received; these have a longer process time.

5.1Preparation of specified datasets and/or biosamples It takes on average 6-8 weeks to prepare a specified dataset. Both dataset preparation and biosample selection is started in parallel with Data/Biosample Use Agreement preparation.		5.2Sign Data and Biosample Use Agreements (DUA/BUA) To access data and/or biosamples your employer/institution will need to sign appropriate use agreement(s). Datasets with online click-through agreements (e.g., Enroll-HD) are immediately accessible. Wet ink agreements will take at least 4-6 weeks to execute. Wet ink BUAs must be signed before biosamples are shipped.

5.1Preparation of specified datasets and/or biosamples

It takes on average 6-8 weeks to prepare a specified dataset. Both dataset preparation and biosample selection is started in parallel with Data/Biosample Use Agreement preparation.

5.2Sign Data and Biosample Use Agreements (DUA/BUA)

To access data and/or biosamples your employer/institution will need to sign appropriate use agreement(s). Datasets with online click-through agreements (e.g., Enroll-HD) are immediately accessible. Wet ink agreements will take at least 4-6 weeks to execute. Wet ink BUAs must be signed before biosamples are shipped.

6Delivery of data and biosamples Most datasets are delivered through the Enroll-HD website. Email notification that your dataset is ready for download will also contain the decryption key. Log in to your account to download and unlock your dataset files. To promote collaborative research you will be asked to provide a project summary that will be posted publicly on this website. The biorepository will prepare and ship your samples.		7Payment of biosamples There is a fixed fee for all biosamples (Enroll-HD, HDClarity, TRACK-HD/Track-On HD), plus variable shipping & handling fees dependent upon the number of samples, shipping conditions (e.g., dry ice), distance, and sample processing steps.

6Delivery of data and biosamples

Most datasets are delivered through the Enroll-HD website. Email notification that your dataset is ready for download will also contain the decryption key. Log in to your account to download and unlock your dataset files.

To promote collaborative research you will be asked to provide a project summary that will be posted publicly on this website.

The biorepository will prepare and ship your samples.

7Payment of biosamples

There is a fixed fee for all biosamples (Enroll-HD, HDClarity, TRACK-HD/Track-On HD), plus variable shipping & handling fees dependent upon the number of samples, shipping conditions (e.g., dry ice), distance, and sample processing steps.