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Transition of Care in Pediatric Rare Endocrine Disorders
Sponsor: Seoul National University Hospital
Summary
This study will evaluate the transition from pediatric to adult care in patients with pediatric-onset rare endocrine disorders. The study includes three components: a review of medical records to assess previous transition outcomes, a survey of adult patients about transition experiences and quality of life, and an evaluation of a structured transition program for participants aged 18 years or older. The transition program provides assessment of transition readiness, individualized education, clinical information transfer, coordinated care between pediatric and adult endocrinology teams, and follow-up after transfer. Researchers will evaluate transfer and retention in adult care, transition readiness, quality of life, appointment attendance, satisfaction, and clinical outcomes.
Official title: Transition of Care in Pediatric Rare Endocrine Disorders: Assessing Unmet Needs and Implementing a Standardized Transition Program
Key Details
Gender
All
Age Range
18 Years - Any
Study Type
INTERVENTIONAL
Enrollment
150
Start Date
2026-05-20
Completion Date
2028-12-31
Last Updated
2026-08-25
Healthy Volunteers
No
Conditions
Interventions
Structured Transition-of-Care Program
The program includes assessment of transition readiness and disease knowledge, individualized education, preparation of a clinical information summary and disease-specific checklist, coordinated transfer between pediatric and adult endocrinology teams, and structured follow-up after transfer.
Locations (11)
Daegu Catholic University Medical Center
Daegu, South Korea
Kyungpook National University Hospital
Daegu, South Korea
Chungnam National University Hospital
Daejeon, South Korea
Chonnam National University Hospital
Gwangju, South Korea
Hwasun Chonnam National University Hospital
Hwasun, South Korea
Inha University Hospital
Incheon, South Korea
Jeonbuk National University Hospital
Jeonju, South Korea
Seoul National University Bundang Hospital
Seongnam, South Korea
Seoul National University Hospital
Seoul, South Korea
Konkuk University Medical Center
Seoul, South Korea
Korea University Guro Hospital
Seoul, South Korea