Dr Tim Benke, Medical Director of the Rett Center of Excellence at Colorado Children’s Hospital is the lead Principal Investigator in a study that is seeking to understand the lived experience of Males with Rett syndrome via their parent report. He would love to have responses from parents in Europe
COMIRB: 23-0075
PI: Dr. Tim Benke
V. 11/09/23
The Diagnostic Experience of Male Rett Syndrome collects information on the lived experiences of parents or caregivers of boys with Rett Syndrome. Key information examined includes the process of getting a male Rett syndrome diagnosis, your son’s systems of care, and your priorities for his health needs.
Enrolled participants will complete an online survey with questions about having a son with Rett Syndrome. The Diagnostic Experience of Male Rett Syndrome study is available to parents or caregivers to boys (alive or passed) with Rett Syndrome.
If you are interested in joining this study, we will need to confirm eligibility via genetic testing results. You can upload those here https://ucdenver.co1.qualtrics.com/jfe/form/SV_0vK1BrjECC32sRw.
If you’re interested in learning more about this study, please email malerettstudy@cuanschutz.edu