Can a Healthy Gut Slow Down Cockayne Syndrome and Trichothiodystrophy?​

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This study represents a collective endeavor to provide our children with every possible chance for advancement, comfort, and hope. By engaging in research, families are not only supporting their own child but also contributing to the well-being of children globally who are impacted by these rare conditions and future children born with DNA repair diseases.

 

How to Get Involved and Learn More If your family wishes to discover more about this study, we encourage you to fill out the brief forms below. A member of the research team at the University of Minnesota will reach out to provide further details and address any inquiries you may have.

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This research is focused on improving quality of life and guiding future treatments.

If your family would like to participate, please complete the two short forms below so the research team can contact you:

 

Here are the links to fill out to get signed up to receive the microbiome study.

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https://is.gd/poopstudy This one should be completed first.

 

https://redcap.link/cockaynesyndromemicrobiome This one should be completed second.

 

The surveys don't ask for mailing addresses so they will reach out via email or phone to request that information.

Participation is easy, no cost to you, you will do everything by mail with prepaid packaging from the University of Minnesota researchers.

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This is for the children and adults living with CS and TTD.

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We appreciate your involvement in this journey and your role in advancing rare disease research—one family at a time.