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NCT01160536 · ClinicalTrials.gov registry record
The Perceived Impact of Children s Risk Status for Hypertrophic Cardiomyopathy on Families: an Exploratory Study
A clinical trial of Cardiovascular Disease, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 47
- Enrollment target
- 1
- Study location
NCT01160536: Completed study of Cardiovascular Disease, sponsored by National Human Genome Research Institute (NHGRI).
NCT01160536 is a study of Cardiovascular Disease that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 47 participants, below the 2,697-participant average among 137 other Cardiovascular Disease trials with a reported enrollment target (98% lower). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT01160536, a study of Cardiovascular Disease, has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 47 participants
- Enrollment target
- 1
- Study location
Study Summary
This study proposes to describe how children s hypertrophic cardiomyopathy (HCM) risk status affects family functioning, behaviors, and relationships. HCM is the most common inherited cardiovascular single-gene disorder. Individuals with HCM may experience shortness of breath, chest pain, palpitations, dizziness, syncope, heart failure, and arrhythmias predisposing to sudden cardiac death at any age. Notably, HCM is the most common cause of sudden cardiac death in people under 30 years of age. Genetic testing can identify at-risk individuals; however, the impact of potentially life-altering genetic information on families remains largely unexplored. Increasingly, health care providers are providing the testing in children for conditions like HCM that are life-threatening and medically manageable without the benefit of understanding the psychological consequences. The few studies that have been conducted suggest that genetic testing in children may result in changes to family relationships, parental emotional wellbeing, parenting behaviors, and child functioning in a subset of children. One synthesis of these studies suggests that children as a group show little evidence for maladjustment to risk information, but that parents are affected by the carrier status of their children. The proposed study intends to further this body of knowledge by exploring the impact of children s risk status on families with HCM. Health care providers and researchers can inform their work with HCM families by better understanding the potential impact of genetic risk as an important component of families adaptation to the life-threatening information about their children. The families targeted for this exploratory study will be purposively sampled from those that have been aware of the children s risk status or not at-risk status for HCM for at least 3 months. The cross-sectional design is composed of semi-structured interviews with a parent and, separately, with his/her 13 to 23 year-old
Conditions Studied
Study Locations (1)
New Jersey
- Children's Cardiomyopathy Foundation - Tenafly
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 47 participants |
| Start Date | 2010-06-24 |
| Est. Completion | 2017-08-02 |
What the finished NCT01160536 record still lists
NCT01160536 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 47 participants, a relatively small participant target, below the 2,697-participant average among 137 other Cardiovascular Disease trials with a reported enrollment target (98% lower).
The record links to 1 condition, with Cardiovascular Disease appearing as the primary indexed condition, and to 0 interventions.
NCT01160536 reports a single indexed study location in New Jersey.
Frequently Asked Questions
What is clinical trial NCT01160536 about?
NCT01160536 is a clinical study titled "The Perceived Impact of Children s Risk Status for Hypertrophic Cardiomyopathy on Families: an Exploratory Study". This study proposes to describe how children s hypertrophic cardiomyopathy (HCM) risk status affects family functioning, behaviors, and relationships. HCM is the most common inherited cardiovascular single-gene disorder. Individuals with HCM may experience shortness of breath, chest pain, palpitatio...
What is the current status of trial NCT01160536?
This trial is currently completed. The enrollment target is 47 participants. The study started on 2010-06-24. Estimated completion is 2017-08-02.
What conditions does trial NCT01160536 study?
This clinical trial studies the following conditions: Cardiovascular Disease.
Who is sponsoring clinical trial NCT01160536?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT01160536 being conducted?
This trial has 1 study location across New Jersey. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
Learn More About Clinical Trials
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Where NCT01160536's enrollment target sits among peer trials
47 108th of 137 higher than 30 of 137 other Cardiovascular Disease trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Cardiovascular Disease trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
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