Biospecimen Resources for Population Scientists

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• Policies and Best Practices for Biospecimen Research
  • NCI Biospecimen Resources
  • Other Non-Government Resources
• Potential Sources of Biospecimens for Investigators
  • NCI Biospecimen Resources
  • NIH Biospecimen Resources

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Danielle Carrick, Ph.D., M.H.S.
Program Director, Genomic Epidemiology Branch
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Policies and Best Practices for Biospecimen Research

NCI Resources

• Biorepositories and Biospecimen Research Branch (BBRB), Division of Cancer Treatment and Diagnosis, NCI
  BBRB is active in development and improvement of policy for biospecimen resource management and collection, supports research informing best practices, and more.
  • Best Practices for Biospecimen Resources
    The Best Practices outline the operational, technical, ethical, legal and policy best practices for NCI-supported biospecimen resources
  • Examples of Standard Operating Procedures
    View examples of Standard Operating Procedures (SOPs) for various biobanking practices associated with the NIH Genotype-Tissue Expression (GTex) project and the Biospecimen Preanalytical Variables program
• Examples of Biospecimen Sharing Policies and Request Forms from NCI-Funded Population-Based Studies
  For studies that are interested in implementing biospecimen sharing, the following are a few examples of NCI-supported studies with well-defined biospecimen sharing forms and policies.
  • Breast Cancer Family Registry (B-CFR)
    • B-CFR biospecimen sharing policy
    • B-CFR biospecimen request forms
  • Colon Cancer Family Registry (C-CFR)
    • C-CFR biospecimen sharing policy
    • C-CFR biospecimen request forms
  • Nurses’ Health Study (NHS-1 and NHS-II)
    • NHS biospecimen sharing policy
    • Accessing Harvard Cohorts Biospecimens
  • Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial
    • PLCO biospecimen request forms
    • Additional information about the PLCO biospecimen application process
  • Other examples of policies and request forms for cohort studies are available through the Cancer Epidemiology Descriptive Cohort Database.

Other Non-Government Resources

• International Society for Biological and Environmental Repositories (ISBER)
  ISBER provides several resources for biobanking and biospecimens, including the ISBER best practices and a tool for evaluating adherence to these practices.
• Public Population Project in Genomics and Society (P3G)
  This not-for-profit international consortium provides policy and ethics support to public and private health research infrastructures by providing strategies to facilitate the development of research infrastructures and optimize data access and use and more.

Potential Sources of Biospecimens for Investigators

This list provides links to biospecimen resources that may be of interest to cancer epidemiologists, but is not exhaustive. Access to resources is dependent on procedures outlined for each individual study or resource. Availability may depend on suitability of proposed research, collaboration with study investigators, ethical considerations, approval from a steering committee, or availability of samples to perform study.

NCI Resources

• Cancer Epidemiology Descriptive Cohort Database (CEDCD)
  The goal of this searchable database is to facilitate collaboration and highlight research opportunities within existing cohort studies. The CEDCD contains descriptive information about cohort studies following groups of people over time for cancer incidence, mortality, and other health outcomes. In addition to general study information, the CEDCD also includes biospecimen information for the studies.
• Funded Projects Involving Biospecimens
  The Epidemiology and Genomics Research Program (EGRP) supports a variety of research involving biospecimens. To learn more about the types of biospecimens being collected and used for a variety of epidemiology research questions, view a list of EGRP's active grants collecting the following biospecimens:
  • DNA specimens
  • Feces specimens
  • Saliva for biomarkers
  • Serum or plasma specimens
  • Tissue specimens
  • Urine specimens
• NCI Human Biospecimen Resources
  Links to multiple resources, including NCI’s Cooperative Human Tissue Network, the National Clinical Trials Network (NCTN) Biospecimen Banks, and Specimen Resource Locator.

NIH Resources

• Eunice Kennedy Shriver National Institute of Child Health and Human Development
  • National Children's Study (NCS) Vanguard Data and Sample Archive
    The NCS Archive provides researchers with access to data and samples collected in the NCS Vanguard Study, which tested methods and procedures planned for use in a large epidemiological cohort study of environmental influences on child health and development.
• National Heart, Lung, and Blood Institute (NHLBI)
  • Biological Specimen and Data Repository Information Coordinating Center (BioLINCC)
    Learn about NHLBI open collections, request data and/or biospecimens, and register study information.
• National Human Genome Research Institute (NHGRI)
  • Electronic Medical Records and Genomics (eMERGE) Network
    The primary goal of the eMERGE Network is to develop, disseminate, and apply approaches to research that combine biorepositories with electronic medical record (EMR) systems for genomic discovery and genomic medicine implementation research. To facilitate collaboration, external institutions may apply for affiliate membership.
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
  • NIDDK Central Repository
    Searchable database for NIDDK data and samples.
• National Institute of Environmental Health Sciences (NIEHS)
  • Human Health Exposure Analysis Resource (HHEAR)
    HHEAR provides researchers access to high-quality, exposure-assessment services including, state of the art laboratory analysis of biological and environmental samples, statistical analysis, and expert consultation on exposure analysis, study design, and data analysis and interpretation.
  • Environmental Polymorphisms Registry
    This is a repository of DNA samples to help NIEHS and other scientists screen for genetic polymorphisms in "environmentally sensitive" genes.
  • EpiShare
    This is a web-based platform for sharing biospecimens and/or datasets with the research community. EpiShare provides a central location for researchers to see summaries of NIEHS Epidemiology Branch studies and specimen inventories, submit requests, and track all requestor correspondence.
• National Institute of Aging (NIA)
  • NIA Virtual Repository
    This virtual repository provides investigators with an introduction to NIA's biogerontology studies and links to repositories that have human biospecimens available for sharing.
• National Institutes of Health Common Fund Projects
  • Genotype-Tissue Expression (GTEx) Project
    This data resource and tissue bank was created to study the relationship between genetic variation and gene expression in multiple human tissues.
• Resources Developed by Multiple NIH Institutes and Centers
  • NeuroBioBank
    This is a national resource for investigators utilizing post-mortem brain tissue and related biospecimens for research to understand conditions of the nervous system.