An interventional study of Structured Transition-of-Care Program in Endocrine Disorder and Rare Disorders, sponsored by Seoul National University Hospital. Recruiting at 11 sites in South Korea. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-08-25.
Sponsored by Seoul National University Hospital · Not applicable, Interventional, and Health services research
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.
This study consists of three components. First, current transition practices and outcomes will be evaluated through retrospective medical record review. Second, a survey of adult patients will assess their transition experiences, unmet needs, and quality of life. Third, a standardized transition program will be prospectively evaluated in eligible participants preparing to transfer from pediatric to adult endocrinology care.
The transition program includes standardized assessment of transition readiness, disease knowledge, quality of life, and psychological status, together with individualized education, preparation of a clinical information summary and disease-specific checklist, coordinated transfer between pediatric and adult endocrinology teams, and follow-up after transfer.
The study is designed to characterize current transition practices and unmet needs and to evaluate whether a standardized transition program can improve the transition from pediatric to adult endocrine care.
322 studies on the registry are indexed under Endocrine System Diseases; 51 are open to participants now.
This study's planned enrollment of 150 is above the median of 69 across 221 interventional studies indexed under Endocrine System Diseases.
Browse Endocrine System Diseases studies →Seoul National University Hospital is the lead sponsor of 1,900 studies on the registry; 274 are open to participants now.
Of its 12 completed or terminated interventional studies of FDA-regulated products, 2 (17%) have results posted.
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Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Participants will receive a structured transition-of-care program including assessment of transition readiness and disease knowledge, individualized education, preparation of a clinical information summary and disease-specific checklist, coordinated transfer from pediatric to adult endocrinology care, and structured follow-up after transfer.
Behavioral: 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.
Proportion of Participants Successfully Transferred to Adult Endocrinology Care
The proportion of participants who successfully transfer to adult endocrinology care will be calculated as the number of participants who complete their first adult endocrinology outpatient visit after transfer from pediatric care divided by the number of participants enrolled in the standardized transition-of-care program.
Time frame: Within 6 months after transfer to adult endocrinology care
Change in Transition Readiness Assessment Questionnaire Score
Transition readiness will be assessed using the Transition Readiness Assessment Questionnaire at baseline and after transition to adult care. Scores will be calculated according to the validated scoring method, with higher scores indicating greater transition readiness. Change will be calculated as the post-transition score minus the baseline score.
Time frame: Baseline and at the first or second adult endocrinology visit after transfer
Change in Transition-Related Anxiety Score
Transition-related anxiety will be assessed at baseline and after transition to adult care using the study-specific transition evaluation questionnaire. Change will be calculated as the post-transition score minus the baseline score, with higher scores indicating greater transition-related anxiety.
Time frame: Baseline and at the first or second adult endocrinology visit after transfer
Participant Satisfaction With the Transition Process
Participant satisfaction with the transition program and adult-oriented care will be assessed using the post-transition evaluation questionnaire. The total score will be calculated according to the study-specific scoring method, with higher scores indicating greater satisfaction.
Time frame: Baseline and at the first or second adult endocrinology visit after transfer
Retention in Adult Endocrinology Care at 12 Months
The proportion of participants who remain in adult endocrinology care at 12 months after their first adult endocrinology visit will be assessed. Retention will be defined as continued attendance at scheduled adult endocrinology follow-up visits during the 12-month period.
Time frame: 12 months after the first adult endocrinology visi
Plan to share: No — Individual participant-level data are not planned to be publicly shared because the study includes participants with rare endocrine disorders, and a potential risk of participant re-identification may remain even after removal of direct identifiers. Aggregate study results may be reported in scientific publications and presentations.
Started May 2026 (actual). Primary completion is estimated for Dec 2028, 31 months after the start.
Of 45 non-industry interventional studies with no phase under Endocrine System Diseases, half reached primary completion within 23 months of starting (the median), counting those still running; a quarter within 11 and three quarters within 39. This study's planned 31 months is above that.
Counting every sponsor, half of 52 studies reached it within 23 months; a quarter within 11 and three quarters within 35.
Endocrine System Diseases covers many different conditions, not one, so the studies compared here vary widely. Read these figures as a rough guide.
How these figures are worked out, and which studies are left out of them.
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