Rett Syndrome Clinical Trial
Official title:
The Diagnostic Experience of Male Rett Syndrome
NCT number | NCT06346106 |
Other study ID # | 23-0075 |
Secondary ID | |
Status | Recruiting |
Phase | |
First received | |
Last updated | |
Start date | May 24, 2023 |
Est. completion date | April 30, 2024 |
The Diagnostic Experience of Male Rett Syndrome collects information on the lived experiences of parents or caregivers to 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. Compensation is not provided.
Status | Recruiting |
Enrollment | 80 |
Est. completion date | April 30, 2024 |
Est. primary completion date | April 30, 2024 |
Accepts healthy volunteers | |
Gender | Male |
Age group | 0 Years to 100 Years |
Eligibility | 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 |
Country | Name | City | State |
---|---|---|---|
United States | University of Colorado Anschutz Medical Campus | Aurora | Colorado |
Lead Sponsor | Collaborator |
---|---|
Children's Hospital Colorado | International Rett Syndrome Foundation, Rocky Mountain Rett Association, University of Alabama at Birmingham, University of Colorado, Denver, University of Pennsylvania, Vanderbilt University School of Medicine |
United States,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Diagnostic experiences | Qualitative interview | retrospective from birth | |
Primary | Attainment of developmental milestones and any regressions | Remote survey of developmental milestones, reported in months | retrospective from birth | |
Primary | QI-disability | "QI-Disability" is a published remote survey of symptom ratings that are combined into an aggregate score of quality of life | retrospective over prior month | |
Primary | Parent priorities for care and counseling | Remote survey the asks parents to prioritize with a rating scale their priorities for patient care | retrospective from birth | |
Primary | Parenting experience | Remote survey the asks parents to rate with a rating scale their parenting experience | retrospective from birth | |
Primary | Information regarding child's death, if applicable | Questionnaire that asks parents about the details of their child's death, if applicable | retrospective from birth | |
Secondary | Family demographics | Questionnaire | retrospective, over last 12 months | |
Secondary | Systems of supports | Questionnaire | retrospective, over last 12 months | |
Secondary | Healthcare preferences | Questionnaire | retrospective, over last 12 months |
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