Request for Information (RFI): Neurological Disorders Biorepository Needs, Practices and Sources

Notice Number: NOT-NS-14-023

Key Dates
Release Date: April 3, 2014
Response Date: May 23, 2014

Related Announcements

Issued by
National Institute of Neurological Disorders and Stroke (NINDS)


The National Institute of Neurological Disorders and Stroke (NINDS) is committed to reducing the burden of neurological disorders on human lives. This is a time sensitive Request for Information (RFI) issued by the NINDS. The purpose of the RFI is to solicit information on biorepository resource needs, practices and sources in the neuroscience research community. The responses to the RFI will be collected and evaluated by Institute staff to assess how best to meet the current and future biorepository resource needs that fall within the mission of the NINDS.


The mission of the NINDS Repository, also known as the NINDS Human Genetics DNA and Cell Line Repository, is to accelerate discovery of causes, risks and mechanisms for neurological disease by sharing samples and data. The NINDS Repository, founded in 2002 and cited by almost 300 publications, has samples and clinical data from 45,000 subjects, with more than 32,000 of these presently available to researchers in academia and industry. Samples include genomic DNA with de-identified clinical data from individuals with dystonia, epilepsy, motor neuron disease (including ALS), Parkinson’s disease, stroke, Tourette syndrome, and neurologically normal controls. The NINDS Repository also includes resources for sharing fibroblasts, induced pluripotent stem cells, and biomarker discovery samples. See for detailed information regarding NINDS Repository collections, clinical data forms, de-identified clinical data, publications citing the resource, and policies.

Information Requested

The NINDS seeks information in the following areas:
1. Sources and business practices. The NINDS requests information regarding biorepository business practices. In particular the NINDS seeks to identify sources and to gather information regarding repository business practices for, but not limited to, biomarkers collections. Comments can also include information regarding sample types, timeline and throughput capabilities, storage capacity, IT infrastructure and management, including interfacing with large external databases, distribution infrastructure, repository project management strategy and practices, and cost/pricing structure and practices. The NINDS Repository biomarkers collections presently include: Parkinson's Disease Biomarkers Program, (, BioFIND (, Predict-HD (, and emerging collections in frontotemporal dementia and traumatic brain injury.

2. Repository science innovation. The NINDS Repository presently includes DNA and limited de-identified clinical data for virtually all samples accepted, and, for a subset, includes: cryopreserved lymphocytes, lymphoblastoid cell lines, fibroblasts, induced pluripotent stem cells, cerebrospinal fluid, plasma, RNA, serum. The NINDS seeks information regarding innovative approaches to repository science, for example, regarding sample types, IT, and business practices, to consider in planning the future of the resource.

3. Best practices. The NINDS Repository has contributed to a number of protocols for sample handing, preparation, and shipping, including, for example, the PDBP biomarkers Laboratory Manual (, and the NINDS Repository Submitter's Guide ( The NINDS seeks information regarding additional authoritative best practices that can further inform future NINDS Repository activities.

How to Submit a Responses

Responses must be submitted electronically using the web-based form at and will be accepted through May 23, 2014. Replies to individual questions are optional, and the site will permit anonymous responses.  
The information provided will be kept confidential, and will be used to assist the NINDS in its strategic planning efforts only. The NINDS ¬†will not provide comments to any responder’s submission. However, responses to the RFI may inform future funding opportunity announcements. Respondents are further advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. No proprietary, classified, confidential, or sensitive information should be included in your response. The Government reserves the right to use any non-proprietary technical information in any resultant solicitation(s).

This request is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government. The NIH does not intend to make any awards based on responses to this RFI or to otherwise pay for the preparation of any information submitted or for the Government's use of such information.


Please direct all inquiries to:

Roderick A. Corriveau, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-496-5680