Status:
COMPLETED
The Perceived Impact of Children s Risk Status for Hypertrophic Cardiomyopathy on Families: an Exploratory Study
Lead Sponsor:
National Human Genome Research Institute (NHGRI)
Conditions:
Cardiovascular Disease
Eligibility:
All Genders
13+ years
Brief 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 s...
Detailed Description
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 s...
Eligibility Criteria
Inclusion
- INCLUSION CRITERIA:
- For Parents:
- A parent is eligible to participate in this study if he/she is:
- Biologically related to his/her 13 to 23 year-old child who meets eligibility criteria,
- Self-identified as one of the primary care-takers,
- Aware of the HCM risk status of his/her child(ren) for at least 3 months.
- Cognitive, and
- English-speaking.
- For Children:
- A child is eligible to participate in this study if he/she is
- Biologically related to his/her eligible parent,
- Between ages 13-23 years old,
- Tested as a minor, and
- Aware of his/her HCM risk status or not at-risk status for at least 3 months,
- Cognitive, and
- English-speaking.
- EXCLUSION CRITERIA:
- Exclusion criteria: A parent is not eligible to participate in this study if he/she
- Is not biologically related to his/her 13 to 23 year-old child,
- Does not self-identify as one of the primary care-takers,
- Is not aware of the HCM risk status of his/her child(ren) for at least 3 months,
- Is cognitive impaired, or
- Does not speak English.
- Exclusion criteria: A child is not eligible to participate I this study if he/she is
- Not biologically related to his/her eligible parent,
- Not between ages 13-to 23 years old,
- Not tested as a minor,
- Not aware of his/her HCM risk status or not at-risk status for at least 3 months,
- Is cognitive impaired, or
- Does not speak English. Note that children who have HCM will not be excluded from the study.
Exclusion
Key Trial Info
Start Date :
June 24 2010
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
August 2 2017
Estimated Enrollment :
47 Patients enrolled
Trial Details
Trial ID
NCT01160536
Start Date
June 24 2010
End Date
August 2 2017
Last Update
December 17 2019
Active Locations (1)
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1
Children's Cardiomyopathy Foundation
Tenafly, New Jersey, United States, 07670