Transition of Care in Pediatric Rare Endocrine Disorders
TRANSPIRE
1 other identifier
interventional
150
1 country
11
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for not_applicable
Started May 2026
Typical duration for not_applicable
11 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
May 20, 2026
CompletedFirst Submitted
Initial submission to the registry
August 21, 2026
CompletedFirst Posted
Study publicly available on registry
August 25, 2026
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 31, 2028
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 31, 2028
August 25, 2026
August 1, 2026
2.6 years
August 21, 2026
August 21, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
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.
Within 6 months after transfer to adult endocrinology care
Secondary Outcomes (4)
Change in Transition Readiness Assessment Questionnaire Score
Baseline and at the first or second adult endocrinology visit after transfer
Change in Transition-Related Anxiety Score
Baseline and at the first or second adult endocrinology visit after transfer
Participant Satisfaction With the Transition Process
Baseline and at the first or second adult endocrinology visit after transfer
Retention in Adult Endocrinology Care at 12 Months
12 months after the first adult endocrinology visi
Study Arms (1)
Structured Transition-of-Care Program
EXPERIMENTALParticipants 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.
Interventions
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.
Eligibility Criteria
You may qualify if:
- Age 18 years or older.
- Diagnosis of a pediatric-onset rare endocrine disorder, including rare metabolic bone and mineral disorders, hypopituitarism, congenital adrenal hyperplasia, rare endocrine tumors, and syndromic or chromosomal disorders requiring endocrine care.
- Currently receiving follow-up care in the pediatric endocrinology department of a participating institution.
- Willing to participate in the standardized transition-of-care program and able to provide written informed consent.
You may not qualify if:
- none
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (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, 03080, South Korea
Konkuk University Medical Center
Seoul, South Korea
Korea University Guro Hospital
Seoul, South Korea
Related Links
MeSH Terms
Conditions
Study Officials
- PRINCIPAL INVESTIGATOR
Yun Jeong Lee
Seoul National University Hospital
Central Study Contacts
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- NA
- Masking
- NONE
- Purpose
- HEALTH SERVICES RESEARCH
- Intervention Model
- SINGLE GROUP
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Assistant Professor
Study Record Dates
First Submitted
August 21, 2026
First Posted
August 25, 2026
Study Start
May 20, 2026
Primary Completion (Estimated)
December 31, 2028
Study Completion (Estimated)
December 31, 2028
Last Updated
August 25, 2026
Record last verified: 2026-08
Data Sharing
- IPD Sharing
- Will not share
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.