CRGC researchers are engaged in a variety of surveillance and research activities utilizing cancer registry data.
Patterns of Care
The Patterns of Care (POC) studies were implemented by the National Cancer Institute (NCI) in 1988 in response to a congressional mandate to report on the dissemination of state-of-the-art therapy into the community. Once a year, the NCI utilizes their Surveillance, Epidemiology, and End Results (SEER) cancer registry program to collect additional diagnostic and treatment information from the populations covered by each of the SEER registries, including the CRGC. The study aim is to evaluate the quality of care in community practice and the diffusion of state-of-the-art therapies into the community setting, with the additional goal of disseminating these findings and providing educational opportunities. NCI selects different cancer sites to study each year.
The CRGC has participated in the SEER POC studies since 2000. Each year, the CRGC staff randomly select about 500 cancer patients in the CRGC area and contact treating physicians to verify radiation, chemotherapy, hormonal therapy, and other therapies used in the treatment of the selected cancers. Additional information is collected on surgery, pathologic margins, tumor characteristics, and hospital and physician characteristics. CRGC staff create fact sheets for each cancer site studied and disseminate to treating physicians (see Factsheets)
Validation of Patient Reported Outcomes Measurement Information System (PROMIS) in Diverse Cancer Populations
CRGC researchers, in collaboration with Georgetown University and three other Surveillance Epidemiology and End Results (SEER) regions, are using cancer registry data to evaluate the usefulness of PROs (patient reported outcomes) among diverse cancer patient populations. Surveys of approximately 4,000 cancer patients in the Greater California regions have been conducted for this study and treatment information will be abstracted from a sample of their medical records.
Enhancing Cancer Registries for Comparative Effectiveness Research (CER)
State and regional cancer registries provide a unique opportunity to compare the effectiveness of different diagnostic and treatment procedures (comparative effectiveness research (CER)). Because these registries are population- based, they include individuals from all diagnostic and treatment facilities and reflect the care individuals receive in the defined communities. Research based on these data can be used to improve the quality of care for all cancer patients in these communities. In the last few years new diagnostic and treatment procedures have been introduced that are not routinely collected by these registries, so the objective of this project is to provide researchers with more complete diagnostic and treatment data. The data will include existing cancer registry data, including patient characteristics, tumor characteristics, treatment, and survival, but will be expanded to include new biomarkers and additional detail regarding systemic regimens/drugs. Data collection procedures to be evaluated include: linkage to additional medical records; increasing electronic reporting from pathology laboratories, treatment facilities, and physician offices; and improved training to cancer registrars.
Cancer and Social Economic Status (SES) in Children
Studies have suggested that some childhood cancers, such as leukemia, are associated with the social economic status (SES) of the children. The impact of SES on cancer in many of these studies is limited because SES is often measured at an aggregate or area level (e.g. mean household income for a zip code or census tract) and not at the individual level. In addition, aggregate data are usually captured at the time the patient is diagnosed, but for most cancers SES earlier in life may be more relevant since these cancers may take years to develop.
From the cancer registry, 6,227 childhood cancer patients, born between 1997 and 2009, were identified and linked to their birth records. The father’s and mother’s occupations were abstracted from these records, coded, and assigned a SES score based on criteria from the Centers for Disease Control. To compare children with cancer to those without cancer, 3 children for each child with cancer were selected from the birth records and their parents’ occupations were also recorded and converted to a SES score. SES scores of children with cancer are being compared to the scores of the children without cancer.
Evaluating the Completeness of Liver Cancer Reporting Under New Clinical Guidelines
The specific aim of this study was to evaluate the completeness of Hepatocellular Carcinoma (HCC) reporting under new clinical guidelines. Researchers evaluated the completeness of HCC reporting by looking at four large hospitals located in the CRGC region, and identified possible sources of missing HCC cases by evaluating cases identified through death clearance that were missed by hospital registries across the region.
Adolescent and Young Adult Experience of Care
This study was designed to help us understand how best to obtain consent, collect medical records, and survey a population-based sample of recently diagnosed adolescent and young adult (AYA) cancer patients. Surveys aimed to address these AYA cancer patients’ experiences with cancer and cancer care. This study was a collaborative effort conducted at multiple Surveillance, Epidemiology and End Results (SEER) regional registries, including CRGC, with an overall goal of enrolling 530 AYA patients aged 15 to 39 years at time of diagnosis. The Cancer Registry of Greater California (CRGC) aimed to enroll a total of 70 patients. Cancer sites included were: acute lymphoblastic leukemia, germ cell tumors, Hodgkin’s and non-Hodgkin’s lymphoma, and sarcomas – including osteosarcoma, Ewing’s sarcoma, and rhabdomyosarcoma.