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NCT00005016 · ClinicalTrials.gov registry record
Study of the Experiences and Needs of Parents Continuing a Pregnancy Following a Prenatal Diagnosis of Holopresencephaly
A clinical trial of Holoprosencephaly, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 30
- Enrollment target
- 1
- Study location
NCT00005016 is a study of Holoprosencephaly that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 30 participants. The trial reports 1 study location across 1 state.
The verdict
NCT00005016, a study of Holoprosencephaly, has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 30 participants
- Enrollment target
- 1
- Study location
Study Summary
This study will examine the experiences of parents who decided to continue a pregnancy after receiving a prenatal diagnosis of holopresencephaly (HPE). HPE results from a genetic defect that can cause facial abnormalities such as cleft lip and cleft palate, learning disabilities, muscle weakness, problems with digestion, sleep and muscle control, and other disabilities. The severity of symptoms varies greatly among affected children. Parents whose child was diagnosed before birth with HPE may be eligible for this study. It involves a one-time interview that takes from about 45 to 60 minutes. The interview is conducted either in person or by telephone and consists of three parts, as follows: 1. The experience of receiving the diagnosis of HPE during the pregnancy \< includes general questions such as when and how HPE was diagnosed, what kind of information the parent received, the parent's reaction to the diagnosis, what genetic counseling, if any, the parents received, and so forth. 2. Emotional and informational needs \< includes questions about the parent's specific emotional and informational needs from the time of diagnosis until the baby's birth, and the parent's reactions to support that was given. 3. Questionnaire \< includes questions about the parent and his or her child, such as the parent's age, gender, marital status, and religious background, the child's age, gender, medical problems, and so forth. The questionnaire will be completed verbally for telephone interviews and in writing for in-person interviews. The interview will be tape-recorded and will be kept confidential. Information from this study will provide health professionals, including genetic counselors, more effective strategies for helping other parents who face similar prenatal diagnoses.
Conditions Studied
Study Locations (1)
Maryland
- National Human Genome Research Institute (NHGRI) - Bethesda
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 30 participants |
| Start Date | 2000-03 |
| Est. Completion | 2001-02 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT00005016
The ClinicalTrials.gov registry entry for NCT00005016 describes a study currently listed as completed, categorized as an unspecified phase. The registered enrollment target is 30 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 1 condition, with Holoprosencephaly appearing as the primary indexed condition, and to 0 interventions.
NCT00005016 reports 1 study location spanning 1 distinct geographic area - top geographies include Maryland.
Frequently Asked Questions
What is clinical trial NCT00005016 about?
NCT00005016 is a clinical study titled "Study of the Experiences and Needs of Parents Continuing a Pregnancy Following a Prenatal Diagnosis of Holopresencephaly". This study will examine the experiences of parents who decided to continue a pregnancy after receiving a prenatal diagnosis of holopresencephaly (HPE). HPE results from a genetic defect that can cause facial abnormalities such as cleft lip and cleft palate, learning disabilities, muscle weakness, pr...
What is the current status of trial NCT00005016?
This trial is currently completed. The enrollment target is 30 participants. The study started on 2000-03. Estimated completion is 2001-02.
What conditions does trial NCT00005016 study?
This clinical trial studies the following conditions: Holoprosencephaly.
Who is sponsoring clinical trial NCT00005016?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT00005016 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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