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