About the Project
Human biospecimens have been collected and stored at institutions in the United States for more than 100 years. A 1999 RAND report on biorepositories conservatively estimated that there were more than 307 million tissue specimens from more than 178 million cases stored in the United States, accumulating at a rate of more than 20 million specimens per year (Eiseman and Haga, 1999). These valuable biospecimens and associated data are collected and stored at hundreds of tissue repositories throughout the United States. However, a comprehensive, searchable, Web-based database with information about all of the repositories that collect, store, and distribute human biospecimens for research use does not exist. Other than the 1999 RAND report on biorepositories, there is no other comprehensive source for researchers to use to identify the resources they need to conduct research necessary to discover ways to prevent and treat rare as well as more common diseases.
In the last few years, the sequencing of the human genome and advances in genomic and proteomic research have greatly improved the understanding of the biology of many diseases. The use of human biospecimens has been key to many of these discoveries. To speed the translation of these research findings from the bench to the bedside, it is necessary for researchers to have ready access to large population-based samples of human biospecimens accompanied by detailed medical information.
It is not enough for tissue repositories to have comprehensive collections; the collections and information about them must also be readily accessible to researchers. However, researchers are often unaware of the wealth of resources available to them because of this very lack of a single database that provides information about tissue storage facilities and the human biospecimens available for research purposes. The ongoing need for tissue samples in research, particularly for research on rare diseases, calls for a single database to facilitate the process of finding particular tissues for research.
In its inaugural meeting in August 2004, the Trans-NIH Rare Diseases Research Working Group, established by the National Institutes of Health (NIH) Office of Rare Diseases (ORD), recognized the need for developing such a system for accessing information on human biospecimen collection, storage, and distribution for rare diseases research, as well as research in general. A planning group was formed and, at a meeting in January 2005, identified the need for a regularly updated, Web-based inventory of biospecimen repositories. The planning group formulated a plan of updating the inventory contained in the RAND report Handbook of Human Tissue Sources: A National Resource of Human Tissue Samples (Eiseman and Haga, 1999). Such a comprehensive, searchable, Web-based database will allow researchers to realize the promise of genomics and proteomics by giving them information about and access to appropriately collected, consented, and annotated human biospecimens.
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