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

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, Mr. Scott Kaiser (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, 38 kb) - (4 page limit)
  3. Table Summary of Samples of Interest (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
September 14, 2019 - December 15, 2019 January 31, 2020
December 16, 2019 - February 14, 2020 March 27, 2020
February 15, 2020 - April 10, 2020  May 29, 2020
April 11, 2020 - July 17, 2020 August 28, 2020
July 18, 2020 - September 18, 2020  October 31, 2020
September 19, 2020- December 15, 2020 January 31, 2020

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, 274 kb) and Confidentiality Agreement (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, 68 kb) through the HD BRAC. 

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