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 card...

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The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD) Background: We want to learn more about the relationship between the way families function and how children adapt to having a sibling with Duchenne muscular dystrophy (DMD). What we learn...

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Cultural Congruence in International Genetics Research This study will explore how cultural differences influence genetics research in developing countries. Human genetics research is becoming more common in developing countries. However, when...

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The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual With Rett Syndrome Background: - Rett syndrome (RS) is a panethnic (affecting all ethnicities) neurodevelopmental (impairment of the growth and development of the brain) disorder affecting primarily...

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A Study of Consent Forms for Whole Exome and Whole Genome Sequencing Background: The purpose of this study is to investigate the process of consenting participants to whole exome/genome sequencing and its outcomes. It is unknown how best to consent people ...

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The Experience of Caregivers of Children With Down Syndrome This study will explore how caregivers adjust to having a child with Down syndrome. Primary caregivers 18 years of age and older of a child with Down syndrome may be eligible for this stu...

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Adaptation to Living With a BRCA1/2 Mutation Background: - Women who have a BRCA1/2 gene mutation have a very high risk of developing breast or ovarian cancer. They are also at increased risk of other developing other cancers. Male ...

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The Experience of Uncertainty in Parents of Children With an Undiagnosed Medical Condition Background: - Rare and undiagnosed conditions are often chronic and disabling, with symptoms affecting different organ systems at various levels of severity. Perhaps the most ...

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Living With Frontotemporal Dementia Background: - Frontotemporal dementia (FTD) is the second most common cause of early-onset dementia. Alzheimer s disease is the most common. Alzheimer s disease happens most often in the ...

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Uncertain Genetic Test Results for Lynch Syndrome Background: - Individuals have varying tolerances for receiving ambiguous information. However, not much is known about how ambiguous genetic testing information is received. Also...

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