Status:
COMPLETED
Development of the ORCA Communication Measure for Rett Syndrome
Lead Sponsor:
Rett Syndrome Research Trust
Collaborating Sponsors:
Duke University
Conditions:
Rett Syndrome
Eligibility:
All Genders
18+ years
Brief Summary
This measurement validation study will use qualitative and quantitative methodology to evaluate the Observer-Reported Communication Ability Measure (ORCA), to appropriately capture communication abili...
Detailed Description
This study will develop the Observer-Reported Communication Ability Measure (ORCA), originally validated for Angelman syndrome, to appropriately capture communication abilities in individuals with Ret...
Eligibility Criteria
Inclusion
- Parent or caregiver at least 18 years of age, with a female child, age 2 or older, diagnosed with Rett syndrome confirmed by a disease-causing MECP2 genetic mutation.
- Fluency in the English language
- Currently lives with the child with Rett syndrome
- Ability and willingness to participate in all study activities.
- Access to a telephone and/or access to a device with internet access that is capable of supporting electronic survey completion
Exclusion
- Parent or caregiver with clinically significant condition or situation that makes them not be suitable for the study, in the opinion of research staff.
- Parent or caregiver of a child with Rett syndrome who also has another diagnosis in addition to Rett syndrome.
Key Trial Info
Start Date :
July 2 2021
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
February 10 2022
Estimated Enrollment :
272 Patients enrolled
Trial Details
Trial ID
NCT04920110
Start Date
July 2 2021
End Date
February 10 2022
Last Update
April 22 2022
Active Locations (1)
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1
Duke University
Durham, North Carolina, United States, 27701