CORE Family Studies

Seattle Colon Cancer Family Registry Cohort

Frequently Asked Questions

If you are one of our participants, it is likely you already know quite a bit about the CORE Studies/Seattle CCFRC, but perhaps you would like to clarify certain details. Below are answers to some frequently asked questions. Please keep in mind some questions pertain to recruitment phases of our research. We no longer recruit new participants, but we continue to interview current participants.

Who are you and why are you calling me?

We are calling from the CORE (Colorectal Research in Epidemiology) Studies project, also known as the Seattle Colon Cancer Family Registry Cohort. We last interviewed you about four to six years ago. We follow families affected by colon or rectal cancer, over a period of many years. We would like to interview you again to update our records on your health – even if nothing has changed.

How did you get my name?

You were identified through the Cancer Surveillance System (CSS), a cancer registry at the Fred Hutchinson Cancer Research Center that is supported by the Washington State Department of Health and the National Cancer Institute. In 1990, the Washington State legislature added cancer to the list of reportable conditions and mandated the Department of Health to establish a statewide cancer registry program. Citing the Revised Code of Washington (RCW) Title 70.54.230 Cancer Registry Program:

“It is the intent of the legislature to establish a system to accurately monitor the incidence of cancer in the state of Washington for the purposes of understanding, controlling, and reducing the occurrence of cancer in this state. In order to accomplish this, the legislature has determined that cancer cases shall be reported to the department of health, and that there shall be established a state-wide population-based cancer registry.” [1990 c 280 § 1.]

Thus by law, cancer and other conditions of public health interest are reported by hospitals, laboratories and physicians to the CSS and the state. Patient information is only released by the CSS to accredited investigators for research in compliance with state and federal regulations governing the protection of human research subjects.

Do I have to participate in all aspects of the study?

No. Participation in each and every aspect of the study is completely voluntary. You may choose to participate in all or only part of the study activities, you may stop the telephone interview at any time, or you may choose not to answer individual questions.

What kind of future contacts will occur?

We will send you an informational newsletter approximately once a year to keep you updated on the study and provide you with educational materials you may find of interest. In addition, we will contact you for short surveys every year or two so we can keep your address, telephone number and health information current.

How can I be sure my answers will be confidential?

Information obtained during the course of this study will be kept confidential. We take every precaution to ensure that confidentiality is maintained. Only study staff that have been specially trained in maintaining the confidentiality of research data have access to study data. Study data is protected by complex computer security systems and is kept in locked files. The information will only be used collectively and in a summary statistical format without identifiers (such as names and telephone numbers) for any publication or study report. Further, and at our request, we have been awarded a Certificate of Confidentiality by the National Cancer Institute (NCI).

What is a Certificate of Confidentiality?

A Federal Certificate of Confidentiality is issued by the NCI on behalf of the Secretary of the Department of Health and Human Services (DHHS). This certificate protects against the involuntary release of information about you collected during the course of this study, although such information can be released if you or your guardian requests it in writing. The researchers involved in this project cannot be forced to disclose your identity or any information about you collected in this study in any legal proceedings at the Federal, State, or local level, regardless of whether they are civil, administrative, legislative or criminal proceedings. However, the Certificate does not prevent the review of your research records for the purposes of an internal program audit or evaluation or under some other circumstances, such as under the Federal Food, Drug and Cosmetic Act.

Why do you need to contact my relatives?

The participation of family members is an important part of this research project, designed to learn more about the biological causes of colorectal cancer. To best do this, we would like to study all members within a family, especially when more than one member in the family has been diagnosed with cancer. However, participation of family members is optional and completely voluntary.

How will my relatives be contacted?

All potential participants will receive a letter similar to the one you received followed by a phone call. We have developed our contact procedures in compliance with the Fred Hutchinson Cancer Research Center and National Cancer Institute’s guidelines, which require that we disclose where we obtained their name. Thus, the letter will state that we obtained their name from you (whereas we received your name from CSS). Experience has shown that confusion and apprehension about our research is too great without providing this information. We do not disclose any other information you provide us to anyone, including your relatives.

Whom shall I contact if I have concerns about my rights as a research subject?

Questions about the study or about participating should be directed to Doug Fisher at 206-667-6481 or toll free at 1-800-276-0127.  Concerns about your rights as a research subject may be directed to our Institutional Review Director, Karen Hansen, at 206-667-4867.