The Cancer Surveillance Program (CSP) is the population-based cancer registry for Los Angeles County (LAC), California. The registry was initiated in 1970 and operates within the administrative structure of the Keck School of Medicine of the University of Southern California (USC). The registry became essentially population-based by 1972 and complete incidence data for LAC are available from that year onward. To date, the CSP masterfile contains over 1,700,000 incident cases and some 44,160 records are added annually.
The CSP was initially conceived as an etiologic research resource; complete ascertainment of histologically confirmed cancer cases with collection of a range of demographic information received high priority. At the outset no attempt was made to collect treatment information or to conduct active follow-up other than by routine collection of death certificate information through linkage with California mortality files.
The CSP was initially developed with the voluntary cooperation of hospitals and other institutions, clinics and medical laboratories equipped to diagnose cancer in LAC. By the mid-1970’s, surveys had been carried out in adjacent counties (Orange, Riverside, San Bernardino, and Ventura) and all hospitals identified that diagnosed more than an occasional LAC resident with cancer were also placed under surveillance.
In 1981, the CSP received its first legal mandate when, in conformance with Title 17 of the California Administrative Code, cancer was designated a required reportable disease in LAC by the Director of the California Department of Health Services, in response to a resolution requesting this from the Los Angeles County Board of Supervisors. The USC Cancer Surveillance Program was, in the same resolution, designated as the agent of LAC for the purpose of collecting cancer reports. By virtue of this mandatory reporting requirement, Veteran’s Administration (VA) hospitals, which had been required in 1975 by Federal Statute to cease cooperation, were again included in the registry with acquisition of previously unreported cases.
In 1985, Assembly Bill 136 (Chapter 841, Statutes of 1985) was passed by the California legislature requiring the State Department of Health Services to establish a statewide system for the collection of information to determine the incidence of cancer in California, and providing funding for it. On June 1, 1987 the CSP became the Regional Registry for LAC for this new California Cancer Registry (CCR). The CSP was one of 10 registries combining to provide statewide coverage. The Regional Registries collect, edit and process cases from their region, which are combined in the central registry in Sacramento for further processing and editing. The legislation forming the CCR has been amended four times. AB1761 (Chapter 931, Statutes of 1987) added language specifically stating that the cancer reports to the registry shall be “. . . in a format specified by the Department.” Thus, changes to the dataset required by SEER can be readily implemented by the CCR and by the CSP. AB4017 (Chapter 412, Statutes of 1990) allowed the Regional Registries to use confidential data for research studies and to “enter into agreements to furnish confidential information to . . . federal cancer control agencies…” In 2000, AB48 added benign and uncertain behavior brain and specified central nervous system tumors to the reportable list. In 2001, SB683 increased confidentiality protection of registry data by forbidding release under subpoena. In 2011, AB1329 expanded the options for funding the CCR. In 2016 AB2325 mandated statewide electronic submission of cancer pathology report to begin in 2019. For all of these except the initial 1985 bill creating the CCR, the CSP PI is the only person who actively participated in each of these legislative initiatives, ranging from writing language included in the bills, to testifying in legislative committees to serving as a subject matter expert to the authors of the bills. Throughout this experience, the California legislature has demonstrated a high level of admiration and support for the registry; the most recent two bills passed both houses of the legislature by unanimous “aye” vote.
Under the State model of reporting, hospitals and other facilities where cancer is diagnosed and or treated bear the responsibility, including the fiscal responsibility, for identifying, abstracting and reporting cancer cases to the Regional Registry. This work, according to provisions of the State law, must be done by a Certified Tumor Registrar (CTR) or someone eligible to take the certification examination. Hospitals have an option of contracting with the CSP (or other vendors) to conduct these activities. Case abstracts must be submitted electronically using a CCR-approved software system. State regulations require that data be provided to the Regional Registry within six months after admission. Quality control standards require that casefinding be 97% complete, and that 98% of submitted abstracts pass a series of computerized edits with no more than 1% of records failing any single edit. Total non-compliance by hospitals makes them subject to stiff financial penalties ($500 per day). If the quality control and timeliness standards are not met, hospitals can be charged to have the work completed or redone by CSP personnel.
As part of the CCR, detailed treatment information and a somewhat more detailed tumor staging system were added to the CSP abstract. The State system requires ascertainment of all histologically confirmed as well as non-histologically confirmed cancer cases classified in International Classification of Diseases for Oncology, 3rd Edition (ICDO-3) as malignant or in situ . The only exceptions are basal and squamous cell carcinoma of the skin (cancers of the skin of the genitalia are reportable). Effective for cases diagnosed January 1, 2001, benign and uncertain behavior intracranial and central nervous system tumors became reportable. Also, the CSP collects pre-invasive lesions of the cervix.
In order to provide complete demographic and treatment information on each newly diagnosed cancer occurring in LAC residents and to guarantee compliance with reporting requirements, the CSP now combines elements of an active and a passive surveillance system. For active surveillance, the CSP screens all pathology reports at each of the 90 facilities in which microscopic verification of cancer occurs. This is performed either by frequent visits by a CSP Field Technician who systematically screens all hematology and pathology reports, and collects a copy of each that describes a reportable neoplasm, or increasingly, an automated system (ePath) developed for this purpose performs this work. For each case eligible for a particular study being conducted by scientists at the USC Norris Comprehensive Cancer Center or by scientists from other institutions partnering with the CSP, the Technician reviews the patient’s admission record to obtain necessary demographic details. Called rapid case ascertainment (RCA), these reports are, of necessity, obtained by the CSP and delivered to the investigator within 6 weeks on average of the initial cancer diagnosis.
The State-mandated passive surveillance system requires each hospital or other reporting facility to complete a full abstract, including stage and treatment information, on every cancer case seen in that facility. All completed abstracts are linked by the CSP to the pathology reports obtained under active surveillance to assure that one abstract is completed on each histologically verified case. In addition, as we have done historically, any previously unrecognized cancer diagnoses identified by the State mortality linkage for deceased residents of LAC are followed back to patient records and data are abstracted when possible, in a similar way to those found using pathology reports.
The CSP joined the SEER program in 1992, and added patient follow-up to our program. Despite the size, diversity and mobility of the LAC population, SEER follow-up standards have been met using largely cost-effective automated techniques. In 2001, The Cancer Registry of Greater California joined the SEER program. Together with the CSP and the Cancer Prevention Institute of California, SEER coverage is now statewide, a relatively straightforward change since the California Cancer Registry was modeled on the SEER program.