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Family genetic result communication in rare and undiagnosed disease communities: Understanding the practice
Undiagnosed Diseases Network
Division of Genetics and Genomic Medicine
Institute of Clinical and Translational Sciences (ICTS)
Division of Newborn Medicine
Center of Regenerative Medicine
Roy and Diana Vagelos Division of Biology & Biomedical Sciences (DBBS)
Department of Genetics
Siteman Cancer Center
Department of Developmental Biology
Department of Pediatrics
Washington University School of Medicine
DBBS - Biomedical Informatics and Data Science
DBBS - Molecular Genetics and Genomics
DBBS - Human and Statistical Genetics
DBBS - Developmental, Regenerative and Stem Cell Biology
Intellectual and Developmental Disabilities Research Center (IDDRC)
Edison Family Center for Genome Sciences & Systems Biology
Research output
:
Contribution to journal
›
Article
›
peer-review
4
Scopus citations
Overview
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Keyphrases
Rare Diseases
100%
Family Genetics
100%
Disease Community
100%
Genetic Results
100%
Results Communication
100%
Community Understanding
100%
Undiagnosed Diseases
100%
Adult Participants
62%
Guardian
62%
Family Members
50%
Undiagnosed Diseases Network
37%
Healthcare Professionals
25%
Family Communication
25%
Cardiomyopathy
12%
Genetic Testing
12%
Adult-onset
12%
Shared Genetics
12%
Homozygous Familial Hypercholesterolemia (HoFH)
12%
Genetic Condition
12%
Survey Items
12%
Counseling Strategies
12%
Level of Understanding
12%
Genetic Hearing Loss
12%
Biochemistry, Genetics and Molecular Biology
Genetics
100%
Familial Hypercholesterolemia
10%
Genetic Screening
10%