Cockayne Syndrome Support Network Patient Survey
CONSENT TO BE IN RESEARCH
Study Title: Cancer in Cockayne Syndrome
This is a research study, and you do not have to take part. The researchers, Dr. James Cleaver, Ph.D., and Dr. Sarah Arron, M.D., Ph.D. from the Department of Dermatology will explain this study to you. If you have any questions, you may ask the researchers.
You are being asked to take part in this study because you have a child with Cockayne Syndrome A (ERCC8) or B (ERCC6).
In this study, the researchers are doing a survey to learn more about Cockayne Syndrome and its complications. They are interested in learning if there are any cases of skin cancer in patients of Cockayne Syndrome. About 100 people are expected to participate in this study.
What will happen if I take part in this study?
If you agree to be in this study, you will complete a survey online at the Cockayne Syndrome Network Share & Care website at www.cockaynesyndrome.net. The survey asks about your child's demographics, dermatological history, and sun exposure history. It will take you about five to ten minutes to complete the survey.
Are there any risks to me or my privacy?
Some of the survey questions may make you feel uncomfortable or raise unpleasant memories. You are free to skip any question. We will do our best to protect the information we collect from you. Information which identifies you will be kept secure. The survey itself will not include details which directly identify you, such as your name or address. Please do not put this information on your survey. The completed surveys will be kept secure and separate from information which identifies you. Only a small number of researchers will have direct access to completed surveys. If this study is published or presented at scientific meetings, names and other information that might identify you will not be used.
Are there benefits?
There is no benefit to you. The survey results will be used for research.
Can I say "No"?
Yes, you do not have to complete a survey. If you choose not to be in this study you will not lose any of your regular benefits, and you can still receive medical care from UCSF.
Are there any payments or costs?
You will not be paid for completing the survey. There are no costs to you.
Who can answer my questions about the study?
You can talk with the study researcher about any questions, concerns, or complaints you have about this study. Contact the study researchers Dr. James Cleaver at (415) 476-4563 or Dr. Sarah Arron at (415) 353-7878.
If you wish to ask questions about the study or your rights as a research participant to someone other than the researchers or if you wish to voice any problems or concerns you may have about the study, please call the Office of the Committee on Human Research at 415-476-1814.
PARTICIPATION IN RESEARCH IS VOLUNTARY.
You can download a copy of this consent form to keep.
You will be asked separately about authorizing access, use, creation, or disclosure of health information about you.
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