National Biospecimen Network

RAND Report

Case Studies of Existing Human Tissue Repositories

Human tissue has been collected and stored at institutions in the United States for more than 100 years. Each of these institutions, or repositories, was established to meet a specific set of objectives, and its design is integrally linked to those objectives. Tissue collection, processing, and storage techniques vary depending on the purpose of the repository, as do the quality and extent of information collected with the biospecimens.

Over the last year, the National Biospecimen Network (NBN) Design Team, a subset of the Tissue Access Working Group (TAWG) convened by the National Dialogue on Cancer (NDC) to address “access to appropriately collected, consented, and annotated tissue,” has been drafting a blueprint for a national biospecimen network. The overall goal of the TAWG is

to establish a national, pre-competitive, regulatory compliant and genetic-privacy protected, standardized, inclusive, highest quality network of biological sample(s) banks; developed in partnerships with and supported by cancer survivors/advocates; shared, readily accessible, and searchable using appropriate informatics systems (e.g., amenable to molecular profiling capability).

To assist in its examination of existing tissue resources, the NBN Design Team requested that the RAND Corporation conduct case studies of existing human tissue resources to evaluate their utility for genomics- and proteomics-based cancer research and that RAND identify “best practices” at these institutions. This report presents the RAND findings for each repository evaluated and identifies best practices that can be used by the TAWG in its strategic planning process for the development of a new NBN.