Status:
COMPLETED
The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
Lead Sponsor:
National Human Genome Research Institute (NHGRI)
Conditions:
Rett Syndrome
Eligibility:
All Genders
18+ years
Brief Summary
Background: * Rett syndrome (RS) is a panethnic (affecting all ethnicities) neurodevelopmental (impairment of the growth and development of the brain) disorder affecting primarily females. RS is char...
Detailed Description
This study aims to investigate the predictors of family functioning and adaptation in caregivers of individuals with Rett Syndrome (RS), a neurodevelopmental disorder affecting primarily females. Afte...
Eligibility Criteria
Inclusion
- INCLUSION CRITERIA:
- The study population will consist of men and women ages 18 or older who are the primary caregivers of a child with Rett Syndrome.
- The parent may be a biological or adoptive parent or other primary caregiver and the child must reside with the primary caregiver.
- Individuals of all ethnic, religious, socioeconomic, and educational backgrounds and from a variety of geographic locations in the United States will be included.
- EXCLUSION CRITERIA:
- Participants must be able to read and write in English, as it is essential for the researchers to be able to understand participants responses.
Exclusion
Key Trial Info
Start Date :
April 24 2009
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
January 13 2016
Estimated Enrollment :
426 Patients enrolled
Trial Details
Trial ID
NCT00891956
Start Date
April 24 2009
End Date
January 13 2016
Last Update
December 9 2019
Active Locations (3)
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1
University of Alabama
Birmingham, Alabama, United States
2
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21205
3
Baylor College of Medicine
Houston, Texas, United States, 77030