For which projects is CPIC currently recruiting and interviewing study participants?
Answers for individuals participating in research at the Cancer Prevention Institute of California.
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?
The California Cancer Registry
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:
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:
- Risks to participants are minimized.
- Risks to participants are reasonable in relation to anticipated benefits, if any, and the importance of the knowledge that may reasonably be expected to result.
- Selection of participants is equitable.
- Informed consent is sought from each prospective participant or the participant's legally authorized representative.
- Informed consent is appropriately documented.
- When appropriate, the research plan makes adequate provision for monitoring the data collected to ensure the safety of participants.
- When appropriate, there are adequate provisions to protect the privacy of participants and to maintain the confidentiality of data.
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 as of April 11, 2013.
For more information or inquiries about a particular research study, please contact Legal and Regulatory Affairs:
Robert McLaughlin, firstname.lastname@example.org, 510.608.5140.
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.
For which projects is CPIC currently recruiting and interviewing study participants?
For more information about these studies, call CPIC at 510-608-5000 and ask for one of the contacts listed with each study below.
Breast Cancer Networking Study
Researchers at the Cancer Prevention Institute of California have recently launched the Breast Cancer Networking (BCNet) Study funded by the Stanford Cancer Institute. The BCNet study will help researchers learn more about how breast cancer survivors may or may not use the internet to obtain information and emotional support. Our overall goal is to better understand the use of social networking sites, their informational value for health-related purposes among breast cancer survivors, and impact on quality of life in a diverse group of women. Please click here to learn more about the study and what's involved.
Contact BCNet Study via email (email@example.com) or call toll-free at 1-855-226-3868.
The Northern California Family Registry for Breast Cancer
The Northern California Family Registry for Breast Cancer, funded by the National Cancer Institute since 1995, contacts all newly diagnosed breast cancer patients under age 65 years and invites patients that meet certain eligibility criteria to join the Family Registry, along with their family members. In the current enrollment phase from 2006-2011, Latina and African-American families from the Greater San Francisco Bay area and the Sacramento area are invited to join. Study participants complete questionnaires on family history of breast and other cancers, known and suspected risk factors for breast cancer, usual food intake, and treatment for breast cancer. Participants are also asked to provide a blood sample. Breast cancer patients are contacted once a year for a brief family update. The data and biospecimens are most valuable resources for research studies that will increase our understanding of the genetics of breast cancer and the influence of hormonal and lifestyle factors. Please visit http://epi.grants.cancer.gov/CFR/ to learn more about the Breast Cancer Family Registry.
Contact: Dr. Esther John or Enid Satariano (Enid.Sataria@CPIC.org or 510-608-5025) or call toll-free (1-888-441-2643).
Share Thoughts on Care
This research study is a collaboration of cancer care and research institutions across the US to determine how characteristics and beliefs of lung and colon cancer patients, their providers, and their health care institutions influence treatments, outcomes, and satisfaction with care and contribute to disparities in these treatments and outcomes by race/ethnicity, age, etc. Over 5,000 lung and 5,000 colon patients were interviewed shortly after diagnosis and one year later. In addition, patients’ medical records were reviewed and their caregivers and physicians were interviewed.
Currently, we are recontacting patients and family members to conduct a follow-up interview about 3 years after diagnosis. Additional medical record reviews for current health status and information about their ongoing experiences associated with their cancer will be obtained. Upon completion of this work, numerous scientific papers will be written and published.
Contact: if you have further questions about this study or if you are a patient who participated in this study in the past and have not yet been contacted for the follow-up interview, please contact Judy Goldstein (judy.goldstein@CPIC.org or (510) 608-5010).
The California Teachers Study
Since 1995, more than 133,000 teachers and school administrators have been participating in the California Teachers Study (CTS). Teachers that are a part of this study have provided an extensive amount of information that continues to allow researchers to learn more about the causes of breast cancer and other women's health issues.
Every few years, all CTS members are asked to complete a mailed survey updating information about health, lifestyle, and exposures. CTS members are also invited to participate in smaller special studies that collect additional detailed information and/or blood samples to study specific topics. Currently, we are conducting a special study of breast cancer in which we are requesting blood samples from 2,500 CTS members who have been diagnosed with breast cancer and 2,500 who have not.
For more information about the California Teachers Study, please visit www.CalTeachersStudy.org or click here. This study is funded by the National Institutes of Health and is a collaborative effort between researchers at the CPIC, the University of Southern California, the City of Hope, the University of California at Irvine, and the California State Department of Health Services.
Contact: Dr. Pamela Horn-Ross or Christine Duffy (Christine.Duffy@CPIC.org or 510-608-5032 or call toll-free 800-874-5137).
Equality in Breast Cancer Care Study
The Equality in Breast Cancer Care Study is a research study to learn more about how women from diverse cultural and ethnic backgrounds go through the experience of being diagnosed and treated for breast cancer. Your participation in this study will help to answer questions that may allow us to better understand why women who are diagnosed and treated for breast cancer may go through the experience differently. This information will ultimately direct initiatives that will help improve how cancer treatment is given in various populations and to help ensure that all women, regardless of race, language, income or any other factors, have an equal opportunity for treatment. Depending on eligibility, participation in the study involves either an in-person group or one-on-one interview. This study is funded by the U.S. Department of Defense Breast Cancer Research Program, which receives some of its proceeds from breast cancer research postage stamps. more.
Contact: Dr. Scarlett Lin Gomez (Scarlett.Gomez@CPIC.org or 510-608-5041) or Laura Allen (Laura.Allen@CPIC.org or 510-608-5061).
Additional information about CPIC and cancer
Cancer Prevention Institute of California
2201 Walnut Avenue, Suite 300
Fremont, CA 94538-2334
Cancer Information Service
CPIC on the Web
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