How will you use all of my information?

We begin the study by collecting information on various exposures from individuals who do not have cancer and we continue to update this information over time. As cases of cancer or other diseases develop, we will compare those participants who develop cancer with those participants who do not. By doing so, we are able to understand the differences (in lifestyle, environment, and genetic factors) between people who get cancer and those who do not, what the likely risk factors are for cancer, and how to best prevent disease in the future.

Will I ever have to provide medical records?

If you are diagnosed with cancer while you are still participating in CPS-3, we will ask you for written permission to seek more information about your diagnosis and treatment from your doctor and from your medical record. At that time, you can agree to give us permission or not. Since risk factors for cancer may differ by various pathologic characteristics (like tumor location, tissue type, etc.) the best source for accurate information on specific tumor features is the medical record.

Will my information be kept confidential? How will this be done?

Yes. Every effort will be made to protect the identity of the participants in this study. All of the study staff sign confidentiality forms and undergo training in research ethics. When your data are collected, they are labeled with a unique identification number. After your data are collected, your blood samples, questionnaires, and other study materials are stored separately from all personal identifiers, such as your name, address, phone number, and social security number. All study materials will be stored in a locked facility and secured computer files, and your personal contact information will be kept in separate files accessible only to a limited number of CPS staff. This information will not be shared with anyone, including other staff at the American Cancer Society, unless they are directly involved in managing CPS-3.

Why do I have to provide my social security number?

We understand that social security numbers are private and many individuals are worried about sharing this information. However, social security numbers are very important in long-term follow-up studies like CPS-3. We use them to link with cancer registries and death certificates, to learn who in the study has developed cancer or who has died. We will never willingly share this number with anyone and only key study personnel will have access to use it for purposes related directly to CPS-3. These personnel are part of the scientific research team and understand the importance of protecting your privacy.

Comments are closed