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Cancer Family Registries - Questions & Answers |
What are the Cancer Family Registries (CFRs)?The Breast and Ovarian Cancer Family Registries and the Colon Cancer Family Registries (CFRs) provide comprehensive research infrastructures to facilitate interdisciplinary population-based, translational research in the genetic epidemiology of breast, ovarian, and colorectal cancer. The CFRs are particularly suited to the identification and characterization of cancer-associated genes, because of the detailed data collected, parallel collection of biomaterials, the dual nature of the large collection of families ascertained (both at-risk and population-based), and the identification of prospective cohorts of probands and their families. The CFRs collect family history information, epidemiologic and clinical data, and related biomaterials from individuals with breast and/or ovarian cancers and Li-Fraumeni syndrome and their families, and from individuals who have histories of colorectal cancer and their families. All together, nearly 19,000 families have joined through the participating sites. The CFRs are international consortia of 12 research institutions in the United States, Australia, and Canada. There are six participating sites each in the Breast/Ovarian and Colon Cancer CFRs, and there is an Informatics Center that supports both registry systems. The Breast/Ovarian CFRs are:
The Colon CFRs are:
What kinds of research are supported?The CFRs support collaborative investigations on:
They also participate in prevention and assessment studies either directly or by identifying and referring high-risk populations. Special features include:
What is the scope of the Registries?The scope covers:
What types of information and biomaterials are available?The CFRs can provide family history (pedigrees), and clinical, demographic, and epidemiologic data on risk factors. Families are also periodically recontacted in order to obtain follow-up epidemiologic data, and data on cancer recurrence, new morbidity, and mortality. The types of biological specimens obtainable are:
Breast/Ovarian CFRs These CFRs include families who have a family history of breast and/or ovarian cancer, and have Li-Fraumeni syndrome. The families are ascertained through high-risk clinic settings, as well as through population-based recruitment. Three registries focus on enrolling high-risk families:
The other three registries are population-based:
Colon CFRs The Colon CFRs are enrolling families at low-, intermediate-, and high-risk of colorectal cancer, as well as some families who do have an inherited risk for cancer. (High-risk is defined as having two or more family members who have colorectal cancer.) These CFRs are located at:
The confidentiality of participants is protected. Participation in approved studies that involve additional contact is optional, and these contacts are handled by the CFRs. Both the Breast/Ovarian and Colon CFRs include non-Hispanic whites, Hispanics, African Americans, Native Americans, Asians, and Pacific Islanders. Some CFRs also are ascertaining population-based control families. All CFRs participating sites retain custody of and have primary rights to the data they collect under their current National Institutes of Health (NIH) awards, subject to the federal government's rights of access and consistent with current U.S. Department of Health and Human Services (DHHS), Public Health Service (PHS), and NIH policies. Collaboration among the CRFs and with external researchers is encouraged,
and collaborative publications by extramural researchers and intramural
NCI researchers are anticipated. If any laboratory, statistical, or other
aspect of the research is handled under contract, individuals involved
in the contract(s) also must be named. Who can obtain data and biomaterials?Registry biomaterials and data are available to the entire scientific community for meritorious studies. Researchers apply to the Advisory Committee of the relevant CFRs to use resources. How do researchers apply?Investigators who are interested in accessing data and/or biospecimens should explore collaborative arrangements with the CFRs investigators and prepare a brief application using the "Access Policies and Procedures Manual" and the form provided on the Informatics Center Web site. To discuss proposals, contact:
Researchers also must:
The CFRs do not provide funding for studies. Researchers will receive documentation of the availability of materials in support of research grant applications for high-priority projects approved through the CFRs. How are requests evaluated?Requests are evaluated for scientific merit and appropriate use of CFRs resources by the Breast/Ovarian or Colon CFRs Advisory Committee, which are independent, multidisciplinary panels of senior cancer researchers. The Advisory Committees make recommendations on research priorities to the Steering Committees of each CFRs system. The Steering Committees, which are the official governing bodies, ratify Advisory Committee recommendations based on the feasibility of providing the requested resources. What are the criteria for evaluation and review of applications?These criteria are established by the Steering Committees to ensure that
valid and productive scientific use is made of the CFRs resources for
multidisciplinary and translational studies on the etiology of cancer,
and to serve the research community at large through collaborations with
CFRs researchers. Researchers applying for resources must provide evidence that the following criteria are satisfied:
Can the CFRs provide other services?Additional information about the CFRs populations may be available through collaboration with the investigators. For additional information and to discuss specific applications, contact: Daniela Seminara, Ph.D., M.P.H. If problems are encountered accessing forms, contact: Ms. Connie Galindo, Management Associate.
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