Family and Caregiver Perspective on Gene Therapy for Rett Syndrome

  • days left to enroll
Updated on 23 August 2022
Online studies


If you or someone you know would be interested in participating in an online survey, please visit

The purpose of this study is to assess the attitudes and opinions of parents, siblings, caregivers, and legal guardians of individuals with Rett syndrome about gene therapy. The study is available for individuals living in the United States. We hope that this study will help guide current gene therapy research, impact patient enrollment in research and clinical trials, and help with the development of educational resources regarding gene therapy for Rett syndrome.

Research participants will be asked to complete an online survey. The survey will ask about their experiences, feelings, and concerns about research in Rett syndrome. In particular, this survey will also ask about future research and treatment for Rett syndrome using gene therapy. The survey should take approximately 10 to 15 minutes to complete. Upon completion of the survey, individuals will have the option to voluntarily provide information to enter a raffle to win one of four $25 Amazon gift cards. They will also have the opportunity to be contacted for a virtual focus group, which will take approximately 90 minutes to complete. If they participate in a focus group, they will be offered a $40 Amazon gift card in appreciation of their time.


Keri Ramsey is conducting the research study as part of the Genetic Counseling Graduate Program at the University of Arizona.

Condition Rett syndrome, Preserved speech variety, Congenital variety
Clinical Study IdentifierTX305207
Last Modified on23 August 2022


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Inclusion Criteria

parent, sibling, caregiver, or guardian
of an individual with Rett syndrome living in the United States
Participants must be age 18 or older
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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