Questions and Answers: NCI's Contract Award for Geographic Information System To Support Breast Cancer Research on Long IslandNational Cancer Institute 1. What is the Long Island Breast Cancer Study Project (LIBCSP)? The LIBCSP is a multistudy investigation of possible environmental causes of breast cancer in Suffolk, Nassau, and Schoharie counties, N.Y., and in Tolland County, Conn. The investigation began in 1993 under Public Law 103-43 and is funded and coordinated by the National Cancer Institute (NCI), in collaboration with the National Institute of Environmental Health Sciences (NIEHS). The LIBCSP is part of the overall research approach of the National Institutes of Health (NIH), of which NCI and NIEHS are a part, to investigate the causes of breast cancer and find ways to prevent it.  2. What does Public Law 103-43 say? The Public Law enacted in 1993 directed that a study be conducted of "potential environmental and other risks contributing to the incidence of breast cancer" in Nassau, Suffolk, and Schoharie counties, N.Y., and in Tolland County, Conn. Further, it directed that the study on Long Island "should include the use of a geographic system to evaluate the current and past exposure of individuals, including direct monitoring and cumulative estimates of exposure to (1) contaminated drinking water; (2) sources of indoor and ambient air pollution, including emissions from aircraft; (3) electromagnetic fields; (4) pesticides and other toxic chemicals; (5) hazardous and municipal waste; and (6) such other factors as the director [of NCI] determines to be appropriate." 3. What constitutes the Long Island geographic information system (GIS) for breast cancer studies? The GIS will consist of hardware, software, and data tables. The computer hardware will be located in AverStar's offices in Vienna, Va., and when the system becomes operational, authorized users will be able to access the public data tables from offices or laboratories. Commercially available software programs developed for GIS purposes will be used initially. The databases will be obtained from federal, state, and local governments, and private sources. 4. What types of data will be in the GIS? Four types of databases will be included: Geographic framework data, such as Nassau and Suffolk county base maps from the respective county governments, road maps from New York State, and U.S. Postal Service ZIP codes files. Demographic data, such as data from the U.S. Bureau of the Census, Medicare data from the U.S. Health Care Financing Administration (HCFA); and data from the National Health and Nutrition Examination Surveys (NHANES) of the U.S. National Center for Health Statistics (NCHS). Health outcome and health care data, including breast cancer incidence and mortality, hospital discharge, and health facilities data from New York State. Environmental data, such as on land use, land cover, and railroads from the U.S. Geological Survey (USGS) and Nassau and Suffolk counties; traffic from New York State; water use and potential sources of water pollution from USGS, Nassau and Suffolk counties, New York State, and the U.S. Environmental Protection Agency (EPA); air pollution monitoring and potential point sources of air, water, or soil contamination from Nassau and Suffolk counties, New York State, and EPA; chemical usage and release, and hazardous/toxic waste sites from sources including EPA, New York State, and the U.S. Department of Agriculture (USDA); radiation from EPA; and power lines from New York State. Data from EPA's biological monitoring of human exposure from human milk and adipose tissue surveys also are expected to be included. Other data, such as meteorological and climatological data from New York State, weather charts for the National Oceanic and Atmospheric Administration (NOAA), satellite image maps for the U.S. Department of the Interior (DOI), and topographic data from the U.S. Department of Commerce (DOC). 5. How will individuals access the GIS? Levels of access will be established to protect confidential data, such as medical records and other data that could identify individuals, and in accordance with data sharing requirements of the owners, or custodians, of data. Authorized users will be able to access the GIS from their laboratories or offices. A public Web site will provide reports on the progress in developing the system, summary information about its contents, links to publicly available datasets that are included in the system, and in time, findings from studies that use the GIS. The public Web site will be accessible from a home or library computer. 6. Will the community have input into the development of the GIS? The contractor will conduct two town meetings on Long Island to obtain descriptive information about the environment and its history, and input on creating and prioritizing information included in the GIS. An oversight committee for the GIS will be established that will include consumer representation. In addition, the LIBCSP has a 15-member Ad Hoc Advisory Committee, which oversees the overall Project including the GIS; the committee includes five community members. During the GIS planning phase, public workshops were held on Long Island to gain community input. 7. What is the time frame for development of the GIS? The prototype GIS will take two years to develop. The system is not expected to be ready for research purposes, except on a pilot basis, until after this time. The science of developing a GIS to support studies on relationships between environmental exposures and cancer is in its infancy, and the implementation will pose many challenges. This GIS for Long Island is the first one to be developed for studies on relationships between environment and breast cancer. 8. How are GISs used? GISs have many purposes. They are used to geographically display data for community and economic development, emergency management, national defense, and land and natural resource development, to name just a few uses. Nassau and Suffolk counties each have GISs to support their government operations. In public health, applications for GIS are more recent as geo-coded health data and environmental exposure data increasingly become available, and new and easier-to-use GIS software is developed. The U.S. Agency for Toxic Substances Disease Registry (ATSDR) uses GISs to monitor the health of persons living near hazardous waste sites, and to identify areas of potential concern resulting from accidental release of chemicals in the environment. The Centers for Disease Control and Prevention (CDC) uses GIS for disease surveillance, and EPA uses it to support risk assessment, environmental justice analysis, and ecological assessments. 9. What steps were involved in preparation of the Request for Proposals (RFP) for the GIS? A feasibility study was first conducted that indicated that it was possible to develop the GIS for Long Island. Then a working group of federal and non-federal experts in GIS and epidemiology assisted NCI to develop the technical Request for Proposals (RFP), including the identification of databases that would be important to include. The working group held public workshops on Long Island in order to obtain input from the community on development of the proposal, and also met with investigators to obtain their views. Community participation was included in all aspects of the contract evaluation and selection process where federal government procurement regulations permit. 10. What studies are included in the Long Island Breast Cancer Study Project (LIBCSP)? The LIBCSP consists of more than 10 studies, and include human population (epidemiologic) studies, the establishment of a family breast and ovarian cancer registry, and laboratory research on mechanisms of action and susceptibility in development of breast cancer. Most of the studies are being conducted, or were conducted, by investigators at research institutions in the Northeast. At least $22 million is being spent for these research activities from 1993 through 2000 by NCI in collaboration with NIEHS. The major projects are: All women diagnosed with breast cancer on Long Island during a one-year period were invited to participate in the study. About 1,500 women who had been diagnosed with the cancer (cases), and 1,500 women who did not have the disease (controls) enrolled. Each study participant was asked to complete an in-person interview and provide a blood and urine sample. In addition, a random sample of study participants who had resided in their homes for at least 15 years was asked to permit collection of house dust, tap water, and yard soil samples (home study). About 340 cases and 340 controls participated in this component of the study. Recruitment of study participants is completed, and data analysis is beginning. Findings are expected to be available in the year 2000. The principal investigator is Marilie Gammon, Ph.D., of the Joseph L. Mailman School of Public Health, Columbia University, New York City. Electromagnetic Fields (EMF) and Breast Cancer. A population-based, case-control study on Long Island is being conducted to determine if EMFs are associated with increased risk for breast cancer. The study population is a subgroup of the population participating in the Columbia case-control study and who have lived in their current residences for at least 15 years. About 600 cases and 600 controls are participating in the study. The women were interviewed about their EMF exposure, and their homes were visited to take EMF measurements, including spot and 24-hour measurements, ground current measurements, and assessments of the external power lines. No published study to date has included actual measurements of EMFs inside the homes of women who have breast cancer and healthy women. Findings are expected to be available in the year 2000. The principal investigator is M. Cristina Leske, M.D., M.P.H., of the University Medical Center at Stony Brook, Stony Brook. Epidemiology of Breast Cancer on Long Island. A hospital-based, case-control study is investigating breast cancer risk in relation to levels of organochlorine compounds such as polycyclic biphenyls (PCB) and chlorinated pesticides, such as DDT, on Long Island and Schoharie County, N.Y. Levels of these compounds are being analyzed in adipose tissue and blood serum. The study includes patients who were seen between 1994 and 1996 at Long Island Jewish Medical Center, New Hyde Park; North Shore University Hospital, Manhasset; and Bassett HealthCare, Inc., Cooperstown, N.Y., which serves Schoharie County. Breast tissue samples taken from about 400 women who had breast cancer surgery, and fatty tissue from about 700 women who had other surgeries were analyzed. Findings from these analyses are expected by late 1999. The study participants from the Long Island hospitals are now being followed to attempt to determine if survival or recurrence of breast cancer is related to body burden of organochlorines. A questionnaire is being administered to identify lifestyle changes and other factors that may have changed since they were diagnosed with breast cancer, and new blood samples are being taken to determine changes in serum levels over time. Steven Stellman, Ph.D., of the American Health Foundation, New York City, is the principal investigator. Organochlorines and Risk of Breast Cancer. This exploratory case-control study is investigating the relationship between exposure to organochlorine compounds and risk for breast cancer in Tolland County, Conn. About 150 women diagnosed with breast cancer (cases) between 1994 and 1997, and 150 women who have not had breast cancer are enrolled (controls). The study participants provided a blood sample and answered a questionnaire about environmental exposures, medical and diet history, alcohol usage, smoking, and lifetime residences. Findings are expected by late 1999. Tongzhang Zheng, M.D., Sc.D., of Yale University, New Haven, Conn., is the principal investigator. Reducing Barriers to Use of Breast Cancer Screening. This study focuses on women who are known to underuse breast cancer screening. It is investigating whether telephone counseling for these women, either with or without an accompanying educational session for their physicians, will result in increased use of breast cancer screening. The researchers identified over 3,400 women on Long Island who had not received mammograms in the past two years and the two years prior to that. The intervention phase then tested the effectiveness of telephone counseling and physician education in reducing underuse of mammography. Implementation of the interventions and the post-intervention surveys of the women and physicians are now completed. The pre-and post-intervention comparative data analysis is underway to evaluate the efficacy of the interventions. Findings are expected in the year 2000. Dorothy Lane, M.D., M.P.H., of the State University of New York, Stony Brook, is the principal investigator. New York Metropolitan Registry for Breast and Ovarian Cancer Families. The Registry is recruiting families who have a history of breast and/or ovarian cancer. Participants are asked to contribute information, blood, and urine samples that can be used for studies on the causes of these disease. More than 800 families are now enrolled. The Registry is one of six international registry sites funded by NCI to provide researchers a source of information and specimens to speed their investigations into the causes of breast cancer. Rubie Senie, Ph.D., of the Joseph L. Mailman School of Public Health, Columbia University, New York City, is the principal investigator. New York metropolitan area residents are welcome to call 1-888-METRO-08 to inquire about enrollment. On Long Island, individuals may enroll through Stony Brook University Hospital and Medical Center, 1-800-867-3561. Published reports on LIBCSP thus far have been about the research methods used in the studies and on findings from some basic research. Eliot Rosen, M.D., Ph.D., of Long Island Jewish Medical Center, New York City, evaluated how a growth factor called scatter factor may regulate growth of breast cancer. Using tissue samples from Long Island women, he found that levels of scatter factor are higher in invasive breast cancers than in non-invasive cancers. It also causes human breast cancer cells to move faster and to be more invasive in cell cultures. Further, the growth factor induces breast cells to produce an enzyme that degrades tissue, thus facilitating tumor invasion, and stimulates formation of new blood vessels, which is essential for tumor growth and spread. ("Scatter Factor Protein Levels in Human Breast Cancers," American Journal of Pathology 146 (5): 1707-1712, November 1996.) Michael Wigler, Ph.D., Cold Spring Harbor Laboratory, Cold Spring Harbor, N.Y., examined genetic changes in breast tumor tissue from patients on Long Island using a technique called representational difference analysis. Certain point mutations in genes may be linked to environmental exposures, and certain mutations may be characteristic of specific exposures. ("Comparative genomic analysis of tumors: Detection of DNA losses and amplification," Proceedings of the National Academy of Sciences 92:151-155, January 1995.)
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