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NCT00056186 · ClinicalTrials.gov registry record
Transitional Life Events in Patients With Friedreich's Ataxia: Implications for Genetic Counseling
A clinical trial, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 40
- Enrollment target
NCT00056186 is a clinical trial that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 40 participants.
The verdict
NCT00056186 has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 40 participants
- Enrollment target
Study Summary
The purposes of this study are to learn about significant life changes for people with Friedreich's ataxia and about patients' experiences with health care providers. Friedreich's ataxia is a rare genetic disorder in which patients experience progressive muscle weakness and loss of coordination in the arms and legs. They may have other complications, such as vision and hearing impairment, dysarthria, scoliosis, diabetes, and heart disease. The study will explore the impact of this chronic progressive illness on transitional life events, such as career choice and marriage, and the role of family members and health care providers-particularly genetic counselors-in helping patients progress through these events. Patients with Friedreich's ataxia who are 18 years of age or older may be eligible for this study. Those enrolled will participate in a 45- to 60-minute interview by phone or in person, in which they will be asked questions about important changes in their lives and their past experiences with health care providers. The interview will be audiotaped.
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 40 participants |
| Start Date | 2003-03 |
| Est. Completion | 2004-01 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT00056186
The ClinicalTrials.gov registry entry for NCT00056186 describes a study currently listed as completed, categorized as an unspecified phase. The registered enrollment target is 40 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 185 total studies on file at ClinicalTrials.gov.
The record links to 0 conditions, and to 0 interventions.
NCT00056186 reports 0 study locations.
Frequently Asked Questions
What is clinical trial NCT00056186 about?
NCT00056186 is a clinical study titled "Transitional Life Events in Patients With Friedreich's Ataxia: Implications for Genetic Counseling". The purposes of this study are to learn about significant life changes for people with Friedreich's ataxia and about patients' experiences with health care providers. Friedreich's ataxia is a rare genetic disorder in which patients experience progressive muscle weakness and loss of coordination in t...
What is the current status of trial NCT00056186?
This trial is currently completed. The enrollment target is 40 participants. The study started on 2003-03. Estimated completion is 2004-01.
Who is sponsoring clinical trial NCT00056186?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
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