The purpose of this study is to evaluate the quality-of-life of STAC3 patients, assess healthcare access and utilization of STAC3 patients, and examine the perspectives that STAC3 patients and caregivers develop towards newborn screening, genetic counseling, healthcare accessibility, and caregiver burden.
Thank you for your interest, but this study is recruiting by invitation only.
United States (Nationwide)
Kristen Lancaster
Pediatrics - Genetics and Metabolism
Behavioral or Social
Observational
Bones, Joints, Muscles
Child and Teen Health
Developmental
Genetics and Genetic Disorders
Minority Health
Opinions and Perceptions
Parents of Children
Physical Disability
Rare Diseases
22-0943
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