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

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗
Record status
This record was last updated January 16, 2026 (before its estimated February 25, 2026 completion). Its status may not reflect the trial's current state.

Record History

  1. Study First Submitted
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.
Trial Details
NCT Number NCT07348926
Lead Sponsor Bahçeşehir University
Conditions
(from sponsor)		 Rare Genetic Disorders, Quality of Life, Functional Impairment
Related terms Depression
Enrollment 45 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov