Huntington's Disease Biospecimen Resource Access Committee (HD-BRAC)

Huntington's Disease Biosample Access

Investigators interested in obtaining Huntington's Disease (HD) biospecimens should submit their application through the NINDS biosample online submission webform, which also details the application requirements. Requests are reviewed by the Huntington’s Disease Biospecimen Resource Access Committee (HD-BRAC), an external scientific review panel, to ensure that these biosamples are appropriately disseminated for HD biomarker discovery, assay optimization and replication studies.

Step 1: Determine Sample Availability

Biospecimens and associated data are available from the following HD cohorts:

  • PREDICT-HD: a longitudinal observational study facilitating HD biomarker discovery and validation
  • 2-CARE: clinical and biosample data from a completed double-blind, placebo-controlled clinical trial evaluating coenzyme Q10 for the treatment of Huntington’s Disease

Clinical data associated with the BioSEND samples are available through dbGaP.  To view the PREDICT-HD clinical dataset and/or the 2CARE clinical dataset you must first open a dbGaP account.  Please contact Dr. Ran Zhang (NINDS dbGaP liaison) for any questions related to clinical HD data in dbGAP, and follow these links for information on how to apply for a dbGaP account. Please complete the data access request as soon as possible, as the approval process may take time.

It is recommended that investigators visit the NINDS Biorepository BioSEND website to learn more about

  • Data and biospecimens available;
  • Material Transfer Agreements and Data Use Agreements required for each collection;
  • Any tissue processing or other fees associated with the biospecimens and tissue.

The NINDS BioSEND repository is managed by Dr. Tatiana Foroud, along with her Program Manager, Ms. Claire Wegel (biosend@iu.edu).

Step 2: Submit Online Application

All applications are submitted through an online webformWithin the webform, applicants are required to upload the following files (in pdf, gif, jpg, jpeg, or png file formats):

  1. Biosketch
  2. Research Strategy(pdf, 39 KB) (pdf, 38 kb) - (4 page limit)
  3. Table Summary of Samples of Interest(pdf, 157 KB) (pdf, 153 kb) -  (This should include information on sample availability)

The first page of the webform requires the investigator to fill in basic information (e.g name, institution, address) and to upload the biosketch.  The second page of the webform requires the investigator to upload the application files (e.g. Research Strategy and Table Summary) and provide information about funding support for the study.

Applications for biospecimen access will be received on a rolling basis and reviewed according to the following cycle

Date Submitted Reviewed by
December 16, 2020 - February 12, 2021 March 26, 2021
February 13, 2021 - April 16, 2021  May 27, 2021
April 17, 2021 - July 16, 2021 August 26, 2021
July 17, 2021 - September 17, 2021  October 28, 2021
September 18, 2021- December 17, 2021 January 31, 2022

Please note that your application will be shared with Program Staff from NINDS as well as BioSEND at Indiana University.  The HD-BRAC subscribes to the ethical requirements, as described within the Conflict of Interest document(pdf, 280 KB) (pdf, 274 kb) and Confidentiality Agreement(pdf, 75 KB) (pdf, 73 kb).

Step 3: HD BRAC Reviews Application

The BRAC committee will assess the applications based on experimental rationale, feasibility/reproducibility of the assays, expertise of the investigator, availability of the institutional resources to support the study, and the statistical analysis of the number of samples required for the hypothesis testing.  Investigators will be notified by email the outcome of the review (i.e. approve, approve upon revisions, or deny) within a week after the review meeting.  Summary statements are released 2-3 weeks after review.  For applications that were ‘approved upon revisions’, investigators will be notified about concerns that would need to be addressed before the application could move forward.  Please note that the HD BRAC does not provide funding. 

If sample access is approved by the HD BRAC, the two possible outcomes are:

  1. If the study has funding, the samples are distributed to the investigator following a virtual meeting to introduce the sample distribution process (“on-boarding”) and after fulfilment by the investigator of additional requirements specified by BioSEND (i.e. MTA, Data Use Agreement, data analysis and sharing plan).  For questions, please contact Christine Swanson-Fischer, Ph.D.
  2. If the investigator has yet to obtain funding for the study, the BRAC will issue a letter to the applicant documenting provisional access to the samples requested.  This letter can be used to support an application for funding opportunities from the NIH or other organizations.  Conditional approvals will be valid for a period of up to 12 months.

Questions regarding the review process should be directed to the HD-BRAC Coordinator, Christine Swanson-Fischer, PhD. 

View the current list of approved Biospecimen Requests(pdf, 90 KB) (pdf, 89 kb) through the HD BRAC. 

BRAC Membership
View the complete HD BRAC roster(pdf, 72 KB) (pdf, 70 kb)