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The Hawaii Tumor Registry (HTR) is part of the NCI SEER program and has provided incidence and survival data on all cases of cancer in the State of Hawaii since 1973. From 1973 to mid-2009, about 150,000 Hawaii residents were diagnosed with cancer, and about 82,000 cancer deaths were reported.
The HTR is a program of the University of Hawaii’s Cancer Research Center. Its goal is to provide complete cancer reporting for the entire state and serve as a resource for cancer control activities in Hawaii and the United States. The HTR contains over 36,000 malignant specimens as well as a number of non-malignant specimens from the mid-1980s through 2005. Repository specimens are linked to non-identified patient data including demographic information, tumor stage, grade, and histology, as well as treatment and survival information, making it a rich resource for population-based studies on cancer etiology, development, and outcome. The collection is comprised mostly of tissues normally discarded by medical facilities such as hospitals and pathology laboratories.
The Hawaii RTR is facilitated by the Pathology/Histology Shared Resource services of the Cancer Research Center of Hawaii, which supports basic, epidemiologic, translational, and clinical research studies that use human and animal tissue specimens. Its services include procurement of human tissue specimens, histology services, DNA/RNA extraction, tissue microarrays, laser-capture microdissection, and pathology consultation.
Investigators are required to obtain approval from the University of Hawaii Committee on Human Studies (UHCHS) and the Hawaii Commission on Cancer. Investigators may need to document IRB approval from their parent institution, individual informed consent, and approval from individual medical facilities. Because patient confidentiality is a priority, no patient identifiers are provided with specimens. Investigators receiving tissue are required to sign a Material Transfer Agreement for Biospecimensprohibiting the commercial use or transfer to third parties of any portion of tissues provided by the Repository.
The State Health Registry of Iowa (SHRI) joined the NCI SEER program in 1973. Iowa represents and provides data on the rural, agricultural and Midwestern population. For the years 1973-2009, over 512,000 new in situ and invasive cancers were diagnosed among 451,109 Iowans, and 204,927 died from cancer as the underlying cause of death.
As an expanded registry, SHRI uses its incidence, extent of disease, survival, and mortality information to: 1) respond to data requests for frequencies, rates, and trends; 2) initially evaluate potential cancer clusters in Iowa; 3) provide educational information; 4) assess cancer burden and trends for addressing comprehensive cancer control issues; 5) assist with case-finding and data collection related to case-control and cohort studies including electronic linkages for cancer information; 6) provide tissue for studies involving molecular epidemiology; and 7) provide data for etiologic and health services/outcomes research.
The SHRI’s Residual Tissue Repository has received continuous NCI funding for its operation since 1999. This RTR aims to increase access to tumor and non-tumor tissue related to cancer diagnosis and/or treatment to more completely represent the population served by the SHRI. By maintaining contact with pathologists in laboratories that serve Iowans, staff have obtained tissue blocks slated for discard from cancers diagnosed since 1994.
The RTR has also obtained tissue blocks earmarked for discard for cancers diagnosed prior to 1994 from a study population of breast cancer cases and from two large, population-based case-control studies: the Case-control Study of Cancer and Drinking Water Contaminants and the Iowa Radon Lung Cancer Study. These tissue resources will be available primarily to researchers who want to link pathologic data (including molecular data) with epidemiologic information to address population-based hypotheses. The RTR has local IRB approval that does not require patient permission to obtain tissue blocks, but separate University of Iowa IRB approval is required for any studies that use tissue repository materials.
Los Angeles Registry
The USC Cancer Surveillance Program (USC-CSP) is the population-based cancer registry for Los Angeles County. Between its inception in 1972 and 2009, its database accumulated over 1,000,000 records with 36,000 new diagnoses added yearly. The USC–CSP became a SEER registry in 1992.
The Los Angeles Residual Tissue Repository (RTR) is a population-based tissue bank, containing over 1,000,000 tissue blocks from over 50,000 patients in the registry database. As of 2009, 36 Los Angeles County area hospitals (40% of those in the county) routinely donated their tissue blocks to the RTR. Despite being the most populous and ethnically diverse county in the United States, Los Angeles County is not evenly distributed demographically, and the patients whose tumors are donated are determined in part by the location of hospitals that donate blocks. In general, African-American and Latino cancer patients are overrepresented in the RTR relative to the total number diagnosed in Los Angeles County.
Confidentiality is maintained by the local RTR PI. When a hospital donates tissue blocks, they are collected by USC and re-embedded. A new RTR ID is assigned and linked to the cancer registry identification number. Thus, while clinical and demographic data are abstracted, the source is anonymous to investigators and not covered by HIPAA. Sample size can be augmented by procuring blocks from local hospitals. This may be done without written informed consent only if patients are deceased; otherwise, HIPAA regulations apply. The USC-CSP-SEER RTR has arrangements in place to facilitate these "Virtual Tissue Repository" activities. The USC RTR team has worked to build this resource and has also created tissue microarrays for germ cell tumors (S. Martin, Lance Armstrong Foundation Grant), melanoma (M. Cockburn, American Cancer Society Grant), lung cancer (I. Laird, NCI, R01; 6) and pancreas cancer (S. Hewitt, NCI TARP Laboratory; 2).