CORE Family Studies
For the reasons above, we continue to collect information on our participants, even if their health remains the same as at the last time we contacted them.
The Seattle CCFRC also shares general, non-identifiable data with other researchers. They can use information we have already collected, to investigate scientific questions which can only be understood by observing conditions that take years to develop.
For more general information on our study, please visit our website at www.fredhutch.org/corestudies.
How did you get my name?
You are already enrolled in our study; we initially approached you to participate in our study several years ago. At that time, we would have asked if you wanted to participate in our study and, with your consent, an initial telephone “baseline” questionnaire would have been completed. In subsequent years we may have called you asking for your continued participation in additional follow up interviews (much like the survey we are asking you do now), obtaining permission to access medical records and/or for a donated of blood or saliva.
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 survey at any time, or you may choose not to answer individual questions.
What kind of future contacts will occur?
We may ask for permission to access your medical records or ask that you donate a blood or saliva sample. In addition, approximately every year we will send you a newsletter to keep you updated on the study and provide you with information on educational materials you may find of interest.
How long does the telephone survey take?
On average, we have found that the telephone survey takes 10-15 minutes to complete. This is the fastest way of providing follow up survey data.
How long does the online survey take?
On average, we have found that the online survey takes 15 minutes to complete. It depends on how much new information you need to provide.
How do I log on to the survey questionnaire? The site is asking for a token and password.
The token and password needed to access the online survey should be included in the cover letter enclosed in this mailing, along with the web address. If you do not have this information, please call us at 1-800-276-0127.
We can provide this information over the phone, by email, or through the mail. If you chose to receive the information via email, for security reasons, we will send the URL (web address) and the userID/token in one email and the password in a second email.
Can I come back and complete the survey, or do I have to complete the survey in one sitting?
We encourage you to complete the survey in one sitting if possible. However, if you need to come back to the survey, you will be able to complete the survey within 7 days after initially signing into the survey. If you wait longer than 7 days, you will have to begin the survey from the beginning.
Is the information provided on the online survey secure?
Fred Hutchinson staff have taken measures to make sure the data provided is as secure as possible. Data is only stored temporarily in a place that can be accessed by the online interface. The only personal identifiable information connected to your account on the online system is the information you provide when you are filling out the survey. We only send the token/username and password through secure means in order to limit access to your survey.
We take security very seriously and will continue to consult with security experts to update our security as needed. While absolute security is not possible, we have done everything we can to make this platform is as safe as possible. If you still have concerns about online security, we would encourage you to consider one of the other options for taking the survey. Our average telephone interview only takes about 10 minutes and it is a secure way to provide the same information (this information is NOT data entered in an online system, which makes it inherently more secure). To pursue a telephone interview, call 1-800-276-0127 to schedule an appointment.
This survey is like every survey you have completed with us to date. It will ask you to respond to personal questions, including your contact information, medical history (cancer history, colon and uterus surgeries, screening (i.e. colonoscopies, etc.), medications, genetic testing), and the name, vital status and cancer history of your relatives. Therefore, if you choose to use the online survey, it might be best to refrain from launching this survey on a work or public/shared (i.e. library, internet café) computer. Work and public computers are often subject to monitoring. Additionally, you can increase the security of the data by making sure that no one else has access to your User ID and password.
How can I be sure my answers will be confidential?
All information obtained during the course of this study will be kept confidential. We do not disclose any other information you provide us to anyone, including your relatives. We take every precaution to ensure that confidentiality is maintained. Only study staff members 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.
Whom shall I contact if I have concerns about my rights as a research subject?
Feel free to call us with general questions about the study or about participating in this survey by calling 1-800-276-0127 or emailing us at corestudies@FredHutch.org. Concerns about your rights as a research subject may be directed to our Institutional Review Director, Karen Hansen, at 206-667-4867.