What is a research registry?
How will the information from the registry be used?
Who can participate in ICARE?
What are participants asked to do?
Will I need to travel to Moffitt to participate in the registry?
What costs are associated with being a participant in the registry?
How is my personal information protected?
How often can you expect to hear from us?
Would it be helpful to have my family members participate?
Will participation affect my insurance?
What is a research registry?
A registry is used to collect information from a large number of people for the purpose of research. A registry can be described as a long-term and ongoing study. We will ask all ICARE participants for permission to collect their information and place it in our database.
How will the information from the registry be used?
Researchers can use the information collected from participants to increase knowledge about inherited cancer predisposition. Information from the ICARE research registry will help our investigators in two important ways:
- First, it will allow researchers to review and study the medical information of many individuals to answer questions about cancer and its treatment. They will user this information to answer questions ahbout cancer and genetics, such as:
- How common are the inherited genetic changes that cause cancer?
- Why do some people with inherited genetic changes develop cancer and others do not?
- How does a person’s lifestyle interact with genetic changes to cause or prevent cancer?
- How can we use our new knowledge to help prevent cancer or detect it earlier?
- How can we improve cancer treatments?
- How can people cope better with cancer and cancer risk?
Who can participate in ICARE?
Individuals with the following background are welcome to participate in ICARE:
- Have a personal or family history of cancer or have a hereditary cancer mutation (e.g. BRCA1, BRCA2).
- Are at least 18 years of age.
What are participants asked to do?
- Review and Sign the Informed Consent Form - Participants will be asked to complete the ICARE informed consent document in order to participate in the registry.
- Complete the ICARE Questionnaire - The ICARE questionnaire will ask questions about each participant's medical and family history.
- Complete Annual Follow-up Questionnaires - About once a year, participants will be contacted for follow-up information to ensure their information stays up to date.
- Donate a biological sample - Participants may be asked to provide a biological sample in for the form of blood, saliva and/or urine for research purposes.
Will I need to travel to Moffitt to participate in the registry?
No. You will not need to travel to Moffitt to participate in the registry. All of our correspondence will be coordinated through the mail and prepaid return envelopes will be provided.
What costs are associated with being a participant in the registry?
None. There are no costs to being part of the research registry. The cost of genetic counseling and testing for hereditary cancer risk are not covered by this research study.
How is my personal information protected?
The information you and other participants provide will be used for research purposes only and will be kept strictly confidential, as required by law and our research protocols. Your name will never be used without your permission. If any researcher wants to invite you into a research study for which additional information will be collected, a member of the local ICARE staff will contact you first.
How often can you expect to hear from us?
- We will send out a newsletter periodically to give you updates about the registry and other information that you may find of value, such as research findings, progress reports, and information about new studies.
- We will also follow-up with you annually, to gather updated information about your personal and family medical history.
Would it be helpful to have my family members participate?
Yes. Valuable knowledge about hereditary forms of cancer can be gained by studying families because cancer risk and genetic information is shared among members of the same family. If your family members might be interested in ICARE, please direct them to our website to learn more information. By completing the online response form, we will contact them to discuss this research opportunity further. They can also contact us directly via email at ICARE@moffitt.org or phone at 813-745-6446 (toll free at 800-456-3434 x6466).
Will my participation affect my insurance?
No. Your participation in this research registry will not affect your insurance. More information about the federal law that protects genetic information (ie: The Genetic Nondiscrimination Act – GINA) is available at the following link: http://www.geneticalliance.org/ginaresource.