EGRP Bulletin - Winter 2008-2009
Take Advantage of EGRP's Research Services and Resources
Assistance in Developing Cancer Epidemiology Consortia
EGRP facilitates and funds consortia that can conduct the types of largescale epidemiologic studies needed to address complex questions about the etiology of cancer. The Program provides assistance through all phases of consortia development—from conceptualization through the operation of established consortia. Assistance is provided in numerous ways, including through grant support, assistance in identifying partners with similar research interests, advice on policies and processes that have proven successful with other cancer epidemiology consortia, participation on steering committees, and in evaluating established consortia. Daniela Seminara, Ph.D., M.P.H., is EGRP Scientific Consortia Coordinator, e-mail: seminard@mail.nih.gov.
The operating definition used for a Consortium is:
A consortium in epidemiology is a group of scientists from multiple institutions who have agreed to cooperative research efforts involving, but not limited to, pooling of information from more than one population study for the purpose of combined analyses. The consortium group is able to address scientific questions that cannot otherwise be addressed through the effort of a team of investigators at a single institution due to scope, resources, population size, and need for an interdisciplinary approach. The cooperation usually involves multiple projects over an extended time. Groups participating in a consortium may partner in the writing of research grant applications, but consortia activities are not limited to a specific grant/ project.
The creation of a consortium is independent from funding mechanisms and does not indicate definite grant support. However, EGRP and its staff can provide supportive activities and tools.
Learn about the types of assistance available to develop and operate consortia. EGRP currently is facilitating and/or funding more than 30 cancer epidemiology consortia.
Breast and Colon Cancer Family Registries (CFRs)
The Breast and Colon Cancer Family Registries (CFRs) are international research infrastructures for investigators interested in conducting population- and clinic-based interdisciplinary studies on the genetic and molecular epidemiology of these cancers and their behavioral implications. A central goal of the CFRs is the translation of this research to the clinical and prevention setting for the benefit of the Registries' participants and the general public.
The Breast CFR has information and biospecimens contributed by more than 15,300 families across the spectrum of risk for the cancer and from population-based or relative controls. The Colon CFR has information and biospecimens on more than 14,800 families across the spectrum of risk for colon cancer and from population-based or relative controls. Of particular interest to the CFRs are identification and characterization of cancer susceptibility genes; definition of genegene and gene-environment interactions in cancer etiology; and translational, preventive, and behavioral implications of research findings.
Special features of the CFRs include population-based and clinic-based ascertainment, systematic collection of validated family history, epidemiologic risk factor data, clinical and followup data, biospecimens (including tumor blocks and Epstein-Barr Virus-transformed cell lines), and ongoing molecular characterization of the participating families. Researchers who are interested in accessing data and/or biospecimens can learn more about the CFRs and the application process at the CFRs Web site. The CFRs do not provide funding for research.
EGRP Contact: Daniela Seminara, Ph.D., M.P.H., Program Director, Office of the EGRP Associate Director, e-mail: seminard@mail.nih.gov.
Cancer Genetics Network (CGN)
The Cancer Genetics Network (CGN) is a national network of centers specializing in the study of inherited predisposition to cancer. The resource is available to the research community at large to support studies on the genetic basis of human cancer susceptibility; integration of this information into medical practice; and behavioral, ethical, and public health issues associated with human genetics.
The database has information on more than 22,000 individuals (16,000 families) with cancer and/or a family history of cancer. Data are available on cancer type, a four-generation cancer family history, genetic testing (if performed), genetic mutation if collected in a CGN special study, any known genetic syndromes in the family, biospecimens on many enrollees in special studies, annual followup on all enrollees, history of tobacco use, and sociodemographic information. More data are available on subsets of enrollees who have participated in CGN special studies. The population enrolled makes possible research on both common and uncommon tumors.
This unique infrastructure enables studies on genes of moderate and low penetrance, as well as more easily identified high-penetrance genes. The CGN welcomes opportunities to collaborate with research groups on important studies, and/or it can provide data and biospecimens—and a range of services and expertise—to support independent studies. Research funding is not provided.
The CGN is operated through a contract awarded by EGRP to Massachusetts General Hospital (MGH) in the spring of 2007. MGH is the Data Coordinating Center and subcontracts with 14 centers that provide the infrastructure to support studies. NCI started the CGN in 1998 through a group of EGRP-funded cooperative agreement grants. Visit the CGN Web site.
Diane M. Finkelstein, Ph.D., is MGH Program Manager/Principal Investigator, and Nora Horick, M.S., is MGH Project Manager.
EGRP Contact: Scott Rogers, M.P.H., Project Officer, EGRP, e-mail: rogerssc@mail.nih.gov.
Geographic Information System for Breast Cancer Studies on Long Island (LI GIS)
The Geographic Information System for Breast Cancer Studies on Long Island (LI GIS) is a unique research tool combining an extensive data warehouse with statistical and spatial software and extensions. The LI GIS is designed primarily to study potential relationships between environmental exposures and breast cancer in Nassau and Suffolk counties (Long Island), NY; however, its application can be extended to the study of other diseases.
This unique research tool has more than 80 in-depth, highquality datasets that primarily cover the 1990s but also cover several previous decades. Breast cancer is a disease of long latency, and data from years ago are especially useful to researchers. The LI GIS incorporates topographic data; demographic data; health outcome data, including relative breast cancer incidence; and environmental data for Long Island. Additional environmental data are included with less detail and geographic precision for areas within 31 miles of the two counties, and very limited data for areas within a 100-mile radius from the midpoint of the boundary line between the two counties. The extended area includes counties in Connecticut, New Jersey, New York, Pennsylvania, Rhode Island, and Massachusetts.
The LI GIS points to a broad range of statistical, analytical, and modeling features that allow users to: calculate, display, visualize, and compare disease rates; identify disease clusters; conduct spatiotemporal analysis; model potential exposures; and help generate and test hypotheses about possible relationships between a disease and potential exposure. LI GIS datasets can be applied to base-layer maps, and researchers can use the LI GIS's rich data sources to build on base maps to better understand patterns of environmental exposures and certain determinants of breast cancer or other diseases.
Visit the LI GIS Web site to learn more. Access other information about the ways in which NCI makes use of GIS technology.
Contact: Deborah Winn, Ph.D., Co-Project Officer, EGRP Acting Associate Director, e-mail: winnde@mail.nih.gov.
