A Handbook of Human Tissue Sources A National Resource of Human Tissue Samples

To date, no central database captures information about stored tissue samples. This handbook serves as a national resource, to bring together for the first time, in a single document, information about tissue storage in the United States. It provides information about several aspects of stored tissue samples, such as how many samples exist in the United States, where they are, who has access to them, and for what purposes they are used. A conservative estimate from the tissue collections described in this book is that more than 307 million specimens from more than 178 million cases are stored in the United States, accumulating at a rate of more than 20 million per year. This handbook will be a valuable resource for researchers who require tissue samples for studies in genetics, cancer, immunology, physiology, and cell biology, among many other disciplines. In addition, it should be useful to policymakers, physicians, and other professionals in fields realated to health care.

Chapter One: Introduction Historical Perspective Types of Tissue/Organ Banks Uses of Tissue/Organ Banks for Biomedical Research An Inventory of Tissue Sources in the United States Chapter Two: Methods Definitions Data Collection RaDiUS Estimate of Cases Accessioned at Graduate Medical Education Teaching Institutions Organization of Handbook Chapter Three: Large Tissue Banks, Repositories, and Core Facilities Military Facilities National Institutes of Health National Institute of Standards and Technology and the U.S. Environmental Protection Agency Research Universities and Academic Medical Centers Commercial Enterprises Nonprofit Organizations (Noneducational) Chapter Four: Tumor Registries The National Familial Pancreas Tumor Registry California Tumor Tissue Registry NCI Cooperative Family Registry for Breast Cancer Studies and NCI Cooperative Family Registry for Colorectal Cancer Studies Familial Brain Tumor Registry Surveillance, Epidemiology, and End Results Program New York State Cancer Registry Chapter Five: Tissue Collections Created from Longitudinal and Individual Research Studies Longitudinal Studies Research that Simultaneously Creates Tissue Collections or Contributes to a Tissue Bank Chapter Six: Pathology Specimens Pathology Departments at Graduate Medical Education Teaching Institutions DNA Diagnostic Laboratories Clinical Service and Diagnostic Laboratories Centers for Disease Control and Prevention Institutes Chapter Seven: State Screening Laboratories and Forensic DNA Banks Newborn Screening Laboratories Forensic DNA Banks Chapter Eight: Cryopreservation Facilities/Storage Banks Sperm, Ovum, and Embryo Banks Umbilical Cord Blood Banks Chapter Nine: Organ Banks/Blood Banks Organ Banks Blood Banks Chapter Ten: Conclusions Appendix A. Quantity of Stored Tissue Samples in the United States B. Overall Summary of Stored Tissue Samples in the United States C. Summary of Tissue Banks/Repositories by Tissue Type D. Alphabetical Listing of Tissue Banks/Repositories and Contacts E. Alphabetical Listing by State of Tissue Banks Described in Chapter Three F. Tumor Registries by State G. Alphabetical Listing by State of Longitudinal Studies and Research Projects That Simultaneously Create Tissue Banks H. Transplant Organ and Tissue Banks by State I. Cryopreservation Storage Facilities and Fertility Clinics by State J. Stored Tissue Sample Web Sites References Index ———————————————————————————————————————- - Handbook of Human Tissue Sources: A National Resource of Human Tissue Samples Elisa Eiseman, Susanne B. Haga, 1999, MR-954-OSTP (251 pp., $24, ISBN: 0-8330-2766-2). The research was supported by the White House Office of Science and Technology Policy and performed under the auspices of RAND's Science and Technology unit. This document may also be ordered as a printed report.