Transitional Life Events in Patients With Friedreich's Ataxia: Implications for Genetic Counseling
Completed
Conditions studied: Friedreich Ataxia
In brief
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.
Key facts
- Study ID
- NCT00056186
- Run by
- National Human Genome Research Institute (NHGRI)
- People needed
- 40
- Starts
- 2003-03-01
- Expected to finish
- 2004-01-01
- Last updated by the study team
- 2008-03-04
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Any individual diagnosed with Friedreich's ataxia, 18 years of age or older, who speaks English and is either in attendance at the NAF conference, or who has access to a telephone.
You may not qualify if…
- Adolescents and children under the age of 18. Children and adolescents will be excluded due to the potiential for increased psychological and/or emotional.
Where it is running
- National Human Genome Research Institute (NHGRI) — Bethesda, Maryland, United States
Full record on ClinicalTrials.gov
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