Utility of Genomic Sequencing in Community Care Contexts
Institution: University of Louisville
FOA Number: PAR-20-254
Abstract
PROJECT NARRATIVE Families with children who have identified deficits in speech and/or sensory or musculoskeletal impairments without a known cause may be referred for genetic testing to find out whether there is a genetic cause. However, there is little research into how parents and caregivers use this diagnosis to inform decisions about therapeutic services, access to school services, or how a genomic diagnosis informs the practice of the community professionals who provide these services. This project will examine how a genomic diagnosis shapes the care that children receive from community professionals, including physical and occupational therapists, speech-language pathologists, special education teachers, behavior analysts, and mental health providers.
FUNDING AGENCY:
Funder:
NIH
Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Funding Type:
R01
Project Number:
R01HG011598
Start Date:
Sep 22, 2021
End Date:
Jun 30, 2025
PROJECT TERMS:
Address, Advisory Committees, Area, base, Behavior, Behavior Therapy, care systems, Caregivers, Caring, Child, Child Care, Childhood, Clinical, clinical application, clinical care, clinical diagnostics, clinical research site, cohort, Communities, community based service, community setting, Complex, Diagnosis, Dimensions, Disease, Evaluation, exome sequencing, experience, Face, falls, Family, family support, Focus Groups, Future, Genetic, Genetic Diseases, genetic testing, genome sequencing, Genomics, Health, Health Personnel, Healthcare, Impairment, improved functioning, Intervention, Interview, Language, Measures, Medical, Mental Health, Musculoskeletal, National Human Genome Research Institute, Occupational Therapist, Occupational Therapy, Operative Surgical Procedures, Parents, Pathologist, Pharmacology, physical therapist, Physical therapy, policy implication, Preventive service, Professional Practice, Psyche structure, Quality of life, Research, Resources, rural underserved, Schools, Sensory, Services, Shapes, Site, social implication, social media, Source, Special Education, Speech, Speech Therapy, Speech-Language Pathology, Structure, Support Groups, teacher, Technology, Testing, Therapeutic, Translating, Underserved Population