For Study Participants
Here are answers to common questions for individuals participating in research studies at the Cancer Prevention Institute of California (CPIC).
Why does CPIC conduct research?Our researchers conduct studies because we want to know why cancer happens and how we can improve the survival and quality of life for people living with cancer.
How does CPIC conduct research?Answering these questions means working with a lot of people. We need to talk with individuals who have cancer as well as those who do not. People without cancer are recruited so that we can compare their experiences with those of people who do have cancer. This gives us a greater understanding of which characteristics may be more common in people who develop cancers. In our interview studies, we may ask questions about lifestyle issues such as exercise and nutrition or about factors related to the environment, cancer treatment, and family illness history. Sometimes we need to obtain biological samples such as blood and mouth cells so that we can study cancer causes and outcomes at a genetic and molecular level. In other studies, we may need to know how people make decisions about a diagnosis of cancer, such as where they get their information and how they talk with their doctor about cancer.
What type of research does CPIC do?Our research studies provide important information about what causes cancer, how to prevent it, and how to help those who have it. We study many different cancers, including breast, prostate, lymphoma, ovarian, colorectal, lung and thyroid, as well as a broad range of exposures, including diet, physical activity, genetic/molecular factors and viruses.
How does CPIC find people to participate in its research?We find the names of individuals whom we contact through several resources. People diagnosed with cancer are identified through the California Cancer Registry (CCR). Because cancer is a "reportable disease" in California, state law requires that doctors, hospitals and other facilities that diagnose and treat cancer patients report to the CCR each new cancer diagnosis and some information about the cancer patient. The California Department of Health Services runs the CCR. The California legislature set up the CCR because it is needed to support research to monitor cancer and to better understand the disease in our state. The CCR is operated as 10 regional registries collecting information about patients in each region. CPIC operates the two regional registries covering the Greater Bay Area, including the counties of San Francisco, Marin, Contra Costa, San Mateo, Alameda, Santa Clara, Santa Cruz, Monterey and San Benito.
CPIC uses the data collected by the cancer registries to produce statistics describing cancer occurrence - that is, cancer incidence and mortality - in different segments of the population. These grouped data do not contain any information about individuals. Under state law, data that are not grouped, which we also call confidential cancer information, can be used only for cancer research purposes. Confidential cancer information is available only to qualified researchers from nonprofit or educational institutions and only if certain other conditions are met. Thus, before the information is given to a researcher, the proposed study must first be reviewed by one of several specific scientific committees to show that the project will help us understand how cancer is caused or avoided. In addition, the study must be approved by a federally approved Institutional Review Board, which monitors and protects the rights of research subjects.
The Health Insurance Portability and Accountability Act (HIPAA) does not change the required reporting of data to the cancer registries. Because CPIC, as part of the California Cancer Registry, is lawfully considered to be important to public health, health care providers do not need patient authorization to report to the registry.
For more information about cancer reporting in California, you can request a copy of California's Cancer Reporting System and Monitoring Cancer in California by calling (916) 779-0300; by visiting the California Cancer Registry website at www.ccrcal.org or by writing to the following address:
The California Cancer Registry
Department of Health Services
Cancer Surveillance Section
1700 Tribute Road, Suite 100
Sacramento, CA 95815-4402
There are additional resources that we use for finding individuals to participate in our research. When we need to recruit people without cancer to compare with individuals who have been diagnosed with cancer, we may use a variety of methods to identify eligible people, such as calling randomly generated telephone numbers. Information obtained from study participants without cancer is handled under the same strict privacy guidelines that apply to information obtained from participants with cancer, as described above. The new "Do Not Call" legislation, which applies to telemarketers, does NOT apply to public health research such as that conducted by CPIC.
Individuals always have the right to refuse to participate in a study.
How does CPIC protect my rights as a study participant?All of our research follows federal and state laws requiring the protection of people who participate in research studies. Every health research study that involves contact with people or uses people's private information must receive approval from a federally registered Institutional Review Board. At CPIC, the Institutional Review Board (IRB) is composed of CPIC and external scientific members, cancer survivors, medical arts practitioners, and community members. The group has expertise in bioethics, data security, epidemiology, and public health, and some have participated in research studies themselves. The IRB reviews all research studies to make sure that people who consider participating in a study are fully informed about the research, have the freedom to participate or not to participate, and are protected from too much risk when taking part in the study. The IRB is specifically charged to ensure the following:
How does CPIC manage financial conflicts of interest?The CPIC policy on conflicts of interests affecting research grants and contracts is available at the following link: Conflict of Interest Policy-Grants and Contracts.
Current disclosures include the following:
None at present time.
For more information or inquiries about a particular research study, please contact Matt O'Grady via email or at (510) 608-5003.
How does CPIC protect my personal information?We carefully guard private information obtained from study participants. All researchers and their staff who receive funding from the federal or state government are required to complete training and receive certification from the National Institutes of Health (NIH) on the ethical conduct of research involving human subjects. In addition, all CPIC staff members are required to complete training in working with private, or confidential, information on an annual basis.
To ensure that confidentiality is maintained, all documents are stored in secure, locked areas, and databases are secured behind the organizational firewall. Names, contact information, and other identifying information are kept separate from information obtained during an interview with links minimized and available to only key personnel. CPIC never reports or published results that identify specific people. Instead, we compile data from groups of people and report the statistical summaries. These procedures are well established at CPIC and have been used extensively and successfully over the last 30 years.
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