Spinocerebellar Ataxia Biosample Access

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

Step 1: Determine Sample Availability

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

• READISCA: a longitudinal observational study for premanifest and early manifest carriers of SCA1 or SCA3 mutations.
• CRC-SCA: a longitudinal observational history study supported by the National Ataxia Foundation (NAF) for patients with a confirmed diagnosis of SCA 1, 2, 3, 6, 7, 8, or 10.  Note: While participants enrolled in CRC-SCA are followed longitudinally, the biospecimen collection is performed cross-sectionally. 

It is recommended that investigators visit the NINDS Biomarkers Repository 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). Contact BioSEND to obtain sample availability information by emailing biosend@iu.edu).  

Step 2: Submit Online Application

All applications are submitted through an online webform.  Within 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, 40 KB) - (4 page limit)
3. Biosample template(pdf, 181 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

Please note that your application will be shared with Program Staff from NINDS as well as BioSEND at Indiana University.  The SCA-BRAC subscribes to the ethical requirements, as described within  Confidentiality Agreement(pdf, 351 KB).

Step 3: SCA-BRAC Reviews Application

The SCA-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 regarding the outcome of the review (i.e. approve, approve upon revisions, or deny), within approximately 1 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 need to be addressed before the application can move forward.  Please note that the SCA-BRAC does not provide funding. 

If sample access is approved by the SCA-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 Rebecca Price, 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 NINDS BRAC Coordinator, Rebecca Price, Ph.D. 

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

SCA-BRAC Membership
View the complete SCA BRAC roster (pdf, 74 KB)