The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders
Recruiting
Observational Study
Rare Genetic Disorders
Quality of Life
Functional Impairment
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
Healthy Volunteers Welcome
You do not need to have the condition being studied to take part.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 18 – 65
- Sex
- Any
- Study type
- Observational
- Participants needed
- 45 (estimated)
- Sponsor
- Bahçeşehir University · Other
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About This Trial
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 …
Trial Locations
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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 underst…
Contacts