The Diagnostic Experience of Male Rett Syndrome

Launched by CHILDREN'S HOSPITAL COLORADO · Mar 28, 2024

Keywords

ClinConnect Summary

The Diagnostic Experience of Male Rett Syndrome study is looking to understand the experiences of parents or caregivers who have a son with Rett Syndrome. This trial gathers important information about how families navigate the process of getting a diagnosis for their son, the types of care he receives, and what health needs are most important to them. By participating, you'll complete an online survey that asks questions related to your experiences and your son's condition.

To join this study, you need to be an English-speaking parent or caregiver of a male child with a confirmed diagnosis of Rett Syndrome, regardless of his age or whether he is currently alive or has passed away. Unfortunately, parents of boys with a specific genetic variation called MECP2 duplication syndrome are not eligible to participate. It’s important to note that there is no compensation for participating in this study, but your insights could help improve understanding and support for families affected by this condition.

Gender

MALE

Eligibility criteria

• Inclusion Criteria:
• • English-speaking parents (over the age of 18) of male children (all ages, alive or deceased) with confirmed genetic diagnosis of male RTT
• Exclusion Criteria:
• • parents of male MECP2 duplication syndrome