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NCT00006335 · ClinicalTrials.gov registry record
Influences on Female Adolescents' Decisions Regarding Testing for Carrier Status of XSCID
A clinical trial of Severe Combined Immunodeficiency, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 40
- Enrollment target
- 1
- Study location
NCT00006335: Completed study of Severe Combined Immunodeficiency, sponsored by National Human Genome Research Institute (NHGRI).
NCT00006335 is a study of Severe Combined Immunodeficiency that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 40 participants, below the 390-participant average among 5 other Severe Combined Immunodeficiency trials with a reported enrollment target (90% lower). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT00006335, a study of Severe Combined Immunodeficiency, has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 40 participants
- Enrollment target
- 1
- Study location
Study Summary
The purpose of this study is to learn what factors influence adolescent girls' decisions regarding testing for carrier status of X-Linked Severe Combined Immunodeficiency (XSCID). It will provide information about how healthy relatives feel about whether they could be XSCID carriers, whether carrier testing should be pursued, and, if so, at what age. Commonly known as "Bubble Boy Disease," XSCID is a rare, life-threatening immune system disorder that affects only males, but females who carry the gene mutation can pass the disease to their male children. Adolescent girls 13 to 17 years old who have a relative with XSCID and are known to be at risk for being carriers are eligible for this study. Participants will receive genetic counseling to help them decide if they want to be tested for the XSCID gene. Those who elect to be tested will provide a DNA sample from either a blood draw or brushing taken from inside the mouth. They will receive the test results from the same genetic counselor they spoke with before the testing. All participants will also talk with a psychologist over the phone once a year for 3 years to answer questions about how they are feeling and what they know about XSCID. They will be asked to discuss their decision and feelings about carrier testing.
Conditions Studied
Study Locations (1)
Maryland
- National Institutes of Health Clinical Center, 9000 Rockville Pike - Bethesda
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 40 participants |
| Start Date | 2000-09-26 |
What the finished NCT00006335 record still lists
NCT00006335 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 40 participants, a relatively small participant target, below the 390-participant average among 5 other Severe Combined Immunodeficiency trials with a reported enrollment target (90% lower).
The record links to 1 condition, with Severe Combined Immunodeficiency appearing as the primary indexed condition, and to 0 interventions.
NCT00006335 reports a single indexed study location in Maryland.
Frequently Asked Questions
What is clinical trial NCT00006335 about?
NCT00006335 is a clinical study titled "Influences on Female Adolescents' Decisions Regarding Testing for Carrier Status of XSCID". The purpose of this study is to learn what factors influence adolescent girls' decisions regarding testing for carrier status of X-Linked Severe Combined Immunodeficiency (XSCID). It will provide information about how healthy relatives feel about whether they could be XSCID carriers, whether carrier...
What is the current status of trial NCT00006335?
This trial is currently completed. The enrollment target is 40 participants. The study started on 2000-09-26.
What conditions does trial NCT00006335 study?
This clinical trial studies the following conditions: Severe Combined Immunodeficiency.
Who is sponsoring clinical trial NCT00006335?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT00006335 being conducted?
This trial has 1 study location across Maryland. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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