September 23, 2011
A National Neurobiobank
NAMHC Concept Clearance
Roger Little, Ph.D.
Office of Science Policy, Planning, and Communications (OSPPC)
The goal of the NIH Neurobiobank is to create a centralized biorepository for the acquisition, receipt, storage and dissemination of human brains, related biospecimens, and associated clinical data. The goal is to increase the availability of, and access to, high quality specimens for research to understand the neurological basis of disease, while also increasing efficiency and economy of scale. Another goal is to increase tissue donation by increasing awareness of the value of these gifts for understanding brain disorders, via a concerted outreach effort to the disease advocacy community.
The NIH has historically funded brain banks through grants to individual or small groups of investigators with a particular disease focus. Donor tissues are collected at these disease-specific banks, while other tissues of value to NIH Institutes are excluded from collection. Much of the tissue is often not fully utilized and is collected with protocols and quality metrics that vary from site to site. Data generated from these samples is shared in an inconsistent manner as are the samples themselves.
A trans-NIH workgroup was formed in September 2010 to evaluate current approaches and NIH investments in biobanking. Based on consultation with experts both outside and within the NIH, the workgroup found that a coordinated approach could:
- Add significant value by increasing consistency of tissue quality through standardization of shipping, tracking, and handling protocols and quality metrics for these processes;
- Provide consistent ethical and content standards for clinical/phenotypic data collection and availability;
- Increase donation via a broad outreach effort to disease advocacy communities;
- Provide greater investigator access to tissue and associated data;
- Serve as a home for legacy collections of high quality that lack funding or are currently not accessible to investigators; and,
- Allow investigators to see sample inventory and tissue access policies while also providing information to disease advocacy groups, the public and potential donors.
This initiative aims to speed the translation of emerging findings on the neuroscience of mental disorders into novel treatment approaches that will ultimately alter dysfunctional neural circuits and psychological processes underlying mental disorders to reduce symptoms and/or restore function.