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

NCT07348926 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 45

Last updated 2026-01-16

No results posted yet for this study

Summary

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.

Conditions

Sponsors & Collaborators

  • Bahçeşehir University

    lead OTHER

Principal Investigators

  • Tuğçe Tahmaz, PhD · Bahçeşehir University

Eligibility

Min Age
18 Years
Max Age
65 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2025-10-25
Primary Completion
2026-02-25
Completion
2026-03-15

Countries

  • Turkey (Türkiye)

Study Locations

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07348926 on ClinicalTrials.gov