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Cockayne Syndrome Share and Care Network Patient Survey

Cockayne Syndrome Share and Care Network Patient Survey

We are asking families read over this and participate in this short survey for one of our wonderful scientists.

Cockayne Syndrome Share and Care Network Patient Survey

We are asking you to take part in a research study conducted by Sarah Arron MD PhD and James Cleaver PhD at the University of California, San Francisco. This is a survey for parents of children with Cockayne Syndrome A or B. Participation in this study is optional.

If you choose to participate, you will complete a survey that will help us learn more about Cockayne Syndrome and its complications. Please participate only if your child has been diagnosed with Cockayne Syndrome A or B. You may fill out the survey whether your child is alive or no longer living. If you are filling out the survey for more than one child, please fill out a separate survey for each child. The survey will take about five (5) to ten (10) minutes to complete.

You can skip questions that you do not want to answer or stop the survey at any time. The survey is anonymous and confidential, and no one will be able to link your answers back to you. However, if you willing to share identifying information, you can fill out the optional “Additional Information” section at the end of the survey.

Questions or concerns? If you have specific questions about this survey, please contact James Cleaver PhD and Sarah Arron MD PhD at james.cleaver@ucsf.edu and sarah.arron@ucsf.edu. If you have questions or concerns about your rights as a research participant, you can call the UCSF Committee on Human Research at 415-476-1814 (re IRB # 15-163740).

Link to the Survey: https://redcap.ucsf.edu/surveys/?s=AU7uxh6Unk
(Please copy and paste the above web address into your web browser if clicking on the link does not work.)

One thought on “Cockayne Syndrome Share and Care Network Patient Survey

  1. I have a son that was dignosed with Cockayne 41 years ago, I have not been on any site dealing with Cockayne for 15 years. I just wanted to see what changed in the last 15 years. I do not have Facebook or any other social media. My days are very busy careing for Brian, working, and just being a mom.

    Karen DeChant
    universalimagega@comcast.net
    770-396-6770 home
    770 309-6770 cell

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