NCT07348926 The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders
| NCT ID | NCT07348926 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Bahçeşehir University |
| Condition | Rare Genetic Disorders |
| Study Type | OBSERVATIONAL |
| Enrollment | 45 participants |
| Start Date | 2025-10-25 |
| Primary Completion | 2026-02-25 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 45 participants in total. It began in 2025-10-25 with a primary completion date of 2026-02-25.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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.
Eligibility Criteria
Inclusion Criteria: * Caregivers of children aged 0-4 years diagnosed with a rare genetic disorder. * The child must have been receiving physiotherapy for at least 6 months. * Caregivers who voluntarily agree to participate and provide informed consent. * Caregivers who are able to read and understand Turkish to complete the questionnaires. Exclusion Criteria: * Caregivers who have cognitive or language limitations that prevent them from completing the questionnaires. * Caregivers who decline participation or submit incomplete questionnaire forms. * Children or caregivers with an additional medical or neurological condition that prevents participation in the study.
Contact & Investigator
Tuğçe Tahmaz, PhD
PRINCIPAL INVESTIGATOR
Bahçeşehir University
Frequently Asked Questions
Who can join the NCT07348926 clinical trial?
This trial is open to participants of all sexes, aged 18 Years or older, up to 65 Years, studying Rare Genetic Disorders. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT07348926 currently recruiting?
Yes, NCT07348926 is actively recruiting participants. Contact the research team at yagmurerkn@gmail.com for enrollment information.
Where is the NCT07348926 trial being conducted?
This trial is being conducted at Istanbul, Turkey (Türkiye).
Who is sponsoring the NCT07348926 clinical trial?
NCT07348926 is sponsored by Bahçeşehir University. The principal investigator is Tuğçe Tahmaz, PhD at Bahçeşehir University. The trial plans to enroll 45 participants.