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The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome
NCT00891956 · View on ClinicalTrials.gov ↗
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 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT00891956
The ClinicalTrials.gov registry entry for NCT00891956 describes a study currently listed as completed. It is categorized as an unspecified phase, which is the standard way researchers label where a study sits along the investigational pathway from early safety work through later efficacy and post-marketing evaluation. The registered enrollment target is 426 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is National Human Genome Research Institute (NHGRI), which has 242 total studies on file at ClinicalTrials.gov, and sponsors are the parties responsible for study design, oversight, and regulatory filings.
The record links to 1 condition, with Rett Syndrome appearing as the primary indexed condition, and to 0 interventions. Interventions can include drugs, devices, procedures, behavioral programs, or observational arms, and each is tracked as a separate registry field so that downstream queries can filter accurately. When a trial lists multiple interventions, it usually reflects a multi-arm design or a comparison protocol rather than a single treatment being tested in isolation. The brief summary published in the registry is the clearest source of protocol intent and should be read before drawing conclusions from any sidebar tags.
Geographic footprint matters for practical reasons: NCT00891956 reports 3 study locations spanning 3 distinct geographic areas — top geographies include Alabama, Maryland, Texas. A larger site network tends to correlate with broader recruitment capacity, but it does not imply anything about study quality, and site-level enrollment status can diverge from the overall registry status shown above. Every data point on this page comes from the public ClinicalTrials.gov dataset and is reproduced here for reference only; it is not a medical recommendation, an endorsement of the sponsor, or an invitation to enroll. Verify current status, eligibility criteria, and contact details directly at ClinicalTrials.gov, and discuss any participation decision with your own healthcare provider.
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. These conditions were identified from the trial registry and reflect the primary focus areas of the research.
Who is sponsoring clinical trial NCT00891956?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 242 total clinical trials registered on ClinicalTrials.gov. The sponsor is responsible for the study's design, funding, and regulatory compliance.
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.
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