The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders

This study aims to examine the psychological status and quality of life of families with children who have rare genetic disorders. The focus of the study is to understand how the child's level of functional independence relates to the well-being of the family. Functional independence will be assessed using standardized tools, and parental psychological status and quality of life will be evaluated with validated questionnaires. The information gathered from this study may help improve the understanding of how rare genetic disorders affect family dynamics and daily functioning. The results may guide health care professionals in planning family-centered physiotherapy, psychological support, and care programs.

NCT Number	NCT07348926
Lead Sponsor	Bahçeşehir University
Conditions	Rare Genetic Disorders, Quality of Life, Functional Impairment
Enrollment	45 participants
Start Date	2025-10-25
Primary Completion	2026-02-25 (estimated)
Study Completion	2026-03-15 (estimated)
Updated on ClinicalTrials.gov	2026-01-16