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State of California Cancer Reporting System

In 1985 the California State Legislature enacted Assembly Bill No. 136 mandating that the California State Department of Health Services (CSDHS) establish a statewide system for "the collection of information concerning the incidence of cancer." The State of California Cancer Reporting System is now California State Law (Chapter 841, Statutes of 1985).

In accordance with this California State Law, UCLA is required to report all cases of cancer (defined as a malignant neoplasm, including carcinoma in situ, which is specified in Volume I of the 1986 California Cancer Reporting System Standards and as set forth in the International Classification of Diseases for Oncology Field Trial Edition 1986) which are diagnosed or treated on campus. The University is mandated to report these cases regardless of where the patient resides.

In an attempt to facilitate the reporting of cancer diagnosis and treatment, California has been divided into 10 "regional registries" that coordinate and receive information from local sites, such as UCLA, for forwarding to the CSDHS. UCLA falls within California Region 9 (Los Angeles County) and reports cancer diagnosis and treatment information to the University of Southern California (USC) which acts as the Regional Office for Region 9.

Both USC and UCLA have access to information reported to the CSDHS. These institutions are required to handle this information in a confidential manner but are permitted to use the information in accordance with the charge of the California Cancer Reporting System.

The California Cancer Reporting System has been established with two main charges:

1. to "conduct an epidemiological study of the incidence of cancer"; and
2. to determine "the sources of malignant neoplasms" and evaluate "measures designed to eliminate, alleviate, or ameliorate their effect."

This means that the information collected by the California Cancer Reporting System may be used to identify the incidence of cancer in California (e.g., cancer clusters) and/or to conduct research intended to eliminate, alleviate, or ameliorate the effects of cancer. Individuals diagnosed with or treated for cancer at UCLA may be contacted by any individual who has received identifying information from the CSDHS, USC, or UCLA for the purposes of research.

HSPC Policy

In order to ensure that State reporting requirements are met in the most ethical manner possible, the HSPC recommends adherence to three stipulations:

1. Individuals who are diagnosed or treated for cancer at UCLA must be provided with a written description of the California State reporting requirements. This description must inform patients that if they are diagnosed with or treated for cancer at UCLA they will be reported to the regional cancer registry, that the regional cancer registry is located at the USC, and that USC will provide this information to the CSDHS. The description must clearly state that information is reported to the registry to help identify preventable causes of cancer, conduct epidemiological research to help determine the source of cancer, and to conduct research into measures designed to eliminate, alleviate, or ameliorate the effects of cancer. The description should detail the safeguards in place to ensure the confidentiality of information in accordance with California Health and Safety Codes. Finally, the description should clearly state that subjects may be contacted by researchers, using the UCLA registry, the regional cancer registry (at USC) or the state registry (at CSDHS), in an attempt to recruit them into research designed to eliminate, alleviate or ameliorate the effects of cancer.
2. All investigators intending to identify subjects through the UCLA registry are required to submit a research protocol, in accordance with standard HSPC policies and procedures, for review and approval prior to the use of the UCLA registry. No information may be provided to researchers by the UCLA Tumor Registry until the HSPC has granted approval for the study or the study has been determined to be exempt from committee review.
3. For all research conducted utilizing the California Cancer Reporting System, a clear and detailed statement addressing the reporting system and the mechanism of subject identification shall be presented to subjects. This information must be provided to subjects before or during the obtaining of written consent from the subject prior to their participation in the research. It is suggested that the following statement be used when disclosing contact information to potential research subjects:

"The University is mandated by State law (Chapter 841, Statutes of 1985) to report all individuals who are diagnosed with cancer or treated for cancer at UCLA to the California State Department of Health Services. Because you have been diagnosed/treated for cancer, your case has been reported to the California State Department of Health Services.

"The California Cancer Reporting System was established to track and identify cancer in California and to help conduct research into the ways to stop cancer, treat cancer, or treat the effect(s) of cancer. This would include using the California Cancer Reporting System to identify and contact patients diagnosed or treated for cancer for the purpose of research. You have been identified using the California Cancer Reporting System because you have been diagnosed with or treated for (insert type of cancer) which is a type of cancer.

"You are now being contacted to participate in a research study under the direction of (insert name of Principal Investigator). Your participation in this research is voluntary. Your decision not to participate in this study or to withdraw from this study during participation will not adversely effect your medical care. Your decision not to participate in this study will not prevent other researchers from contacting you who use the reporting system to identify potential research subjects."

Research Advisory Panel

The State of California established a Research Advisory Panel (RAP) in 1968 to provide additional review of all proposed research including the use of controlled substances. The primary function of the panel is to provide the approval of research involving controlled substances as required by the California Health and Safety Code. The HSPC may require an investigator to provide RAP approval prior to final committee approval. Please call the OPRS for additional information.