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NCT00891956 · ClinicalTrials.gov registry record
The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
A clinical trial of Rett Syndrome, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 426
- Enrollment target
- 3
- Study locations
NCT00891956: Completed study of Rett Syndrome, sponsored by National Human Genome Research Institute (NHGRI).
NCT00891956 is a study of Rett Syndrome that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 426 participants, below the 502-participant average among 18 other Rett Syndrome trials with a reported enrollment target (15% lower). The trial reports 3 study locations across 3 states. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT00891956, a study of Rett Syndrome, has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 426 participants
- Enrollment target
- 3
- Study locations
Study 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 characterized by the loss of intellectual functioning, fine and gross motor skills, and communicative abilities after a period of seemingly normal development. * Caregivers of individuals with RS face many psychosocial challenges. The stressors can be grouped into the following six categories: emotional difficulties, health-related stressors, uncertainty about their daughter s illness, rejection by their social environment, lack of available or competent experts, and unfavorable comparison with healthy children. * Researchers are making a significant contribution to the adaptation literature with a focus on family functioning and to the little psychosocial research that exists on families with RS. * Researchers hope to narrow down the most important areas on which to focus for intervention strategies in families with RS. Objectives: * To describe family functioning, perceived illness burden, self-efficacy, types of coping methods, and adaptation in caregivers of individuals with RS to examine the relationships between these variables and the outcomes of family functioning and adaptation. * To examine the extent to which appraisals of being a caregiver of an individual with RS and methods of coping are associated with family functioning. * To examine the extent to which appraisals of being a caregiver of an individual with RS, methods of coping, and family functioning are associated with caregiver adaptation. Eligibility: \- Eligibility is based on answering yes to the following three questions: Are you 18 years old or older? Are you the caregiver of a child diagnosed with Rett Syndrome? and Does the child with Rett Syndrome currently reside in your home with you? Design: * Participants in this cross-sectional research design will answer a quantitative survey that incl
Conditions Studied
Study Locations (3)
Alabama
- University of Alabama - Birmingham
Maryland
- Kennedy Krieger Institute - Baltimore
Texas
- Baylor College of Medicine - Houston
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 426 participants |
| Start Date | 2009-04-24 |
| Est. Completion | 2016-01-13 |
What the finished NCT00891956 record still lists
NCT00891956 is an observational study that tracks outcomes without assigning an intervention. The registered 426 participants enrollment target is mid-sized for trials with a published cap, below the 502-participant average among 18 other Rett Syndrome trials with a reported enrollment target (15% lower).
The record links to 1 condition, with Rett Syndrome appearing as the primary indexed condition, and to 0 interventions.
NCT00891956 reports a single indexed study location in Alabama, Maryland, Texas.
Frequently Asked Questions
What is clinical trial NCT00891956 about?
NCT00891956 is a clinical study titled "The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome". 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 characterized by the loss of intellectual functioning, fine and gross motor skills, and communicative ab...
What is the current status of trial NCT00891956?
This trial is currently completed. The enrollment target is 426 participants. The study started on 2009-04-24. Estimated completion is 2016-01-13.
What conditions does trial NCT00891956 study?
This clinical trial studies the following conditions: Rett Syndrome.
Who is sponsoring clinical trial NCT00891956?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT00891956 being conducted?
This trial has 3 study locations across Alabama, Maryland, Texas. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
Learn More About Clinical Trials
Similar trials for Rett Syndrome
Matched on the same primary condition, ranked to surface studies in the same phase first, then by recruiting status, no relevance scoring or editorial curation.
Where NCT00891956's enrollment target sits among peer trials
426 3rd of 18 higher than 16 of 18 other Rett Syndrome trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Rett Syndrome trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
Source ClinicalTrials.gov registry export · 2026-08-08
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Measuring Impact of Computer Gaming on Arm Use in Rett Syndrome
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The Rett Syndrome Global Registry
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