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Overview

Welcome to the Human Biospecimen Data Collection Web site. This Web site contains data entry screens to collect information from biorepositories about the types of human biospecimens they collect, store, and distribute for research use. The Web site was developed under contract with the National Institutes of Health (NIH) Office of Rare Diseases (ORD).

We are contacting biorepositories in the United States to obtain information about the types of human biospecimens that they collect, store, and distribute for research purposes. The information we collect will be used to create an interactive, comprehensive database that is accessible via a Web browser, is searchable online, and contains detailed information about human biospecimens that are collected, stored, and distributed by biorepositories for research use in the United States. The purpose of this project is to facilitate research leading to treatments and cures for rare diseases, as well as more common diseases, by improving researchers' access to needed human biospecimens by providing a system that enables them to access information about biorepositories and their collections.

This Web-based, searchable database of biospecimens collected, stored, and distributed by biorepositories for research purposes will be the first of its kind and will be extremely useful as a comprehensive reference source of human biospecimens in the United States. The new database will contain up-to-date information first and foremost for biomedical researchers, but also for other segments of the biomedical research community (e.g., research funding entities, professional societies, patient advocacy groups, research administrators, and the biotechnology and pharmaceutical industries). All interested parties will be able to use the database to identify and obtain resources for basic and translational research as well as drug development in rare diseases, genetics, rare and common cancers, immunology, physiology, and cell biology, among other disciplines. Beyond providing information about the availability of biospecimens, this database will also provide information about repositories that collect, store, and distribute biospecimens that will be invaluable to the planning and implementation of biomedical research on rare diseases and orphan drug development.