Endocrine DisorderTRANSPIRENCT07786142
Transition of Care in Pediatric Rare Endocrine Disorders
A study testing Structured Transition-of-Care Program in people with Endocrine Disorder and Rare Disorders, run by Seoul National University Hospital at 11 sites in South Korea.
Trial 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… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Endocrine Disorder, Rare Disorders
- What is being tested?
- Structured Transition-of-Care Program
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 150 participants
- Where
- 11 sitesSouth Korea
- Study dates
- 20 May 2026to 31 Dec 2028
- Phase
- Interventional
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Who may be able to join
- 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.
Who cannot join
- none
Trial locations and contacts
11 sites in 1 country. Contact the study team or a site near you to ask about taking part.
11 sites in 1 country
South Korea11 sites, 11 recruiting
- Not yet recruiting
Daegu Catholic University Medical Center
Daegu
Jin-Kyung Kim, 82-53-650-4597, kimjk@cu.ac.kr
Eonju Jeon
- Not yet recruiting
Kyungpook National University Hospital
Daegu
Jeong Eun Moon, 82-53-200-3771, subuya@hanmail.net
Jae-Han Jeon
- Not yet recruiting
Chungnam National University Hospital
Daejeon
Han Hyuk Lim, 82-42-280-7114, damus@cnuh.co.kr
Ju Hee Lee
- Not yet recruiting
Chonnam National University Hospital
Gwangju
Chan Jong Kim, 82-62-220-5114, cjkim@jnu.ac.kr
Dong Jin Chung
- Not yet recruiting
Hwasun Chonnam National University Hospital
Hwasun
A Ram Hong, 82-61-379-7114, wanilove23@nate.com
- Not yet recruiting
Inha University Hospital
Incheon
Eun Young Joo, 82-32-890-2114, freegana@naver.com
Seongbin Hong
- Not yet recruiting
Jeonbuk National University Hospital
Jeonju
Minsun Kim, 82-63-250-1114, 082kiki@hanmail.net
Ji Hyun Park
- Not yet recruiting
Seoul National University Bundang Hospital
Seongnam
Hwa Young Kim, 82-31-787-7289, hylot11@gmail.com
Sung Hye Kong
- Recruiting
Seoul National University Hospital
Seoul, 03080
Yun Jeong Lee, 82-2-2072-2811, yjlee103@snu.ac.kr
Jung Hee Kim
- Not yet recruiting
Konkuk University Medical Center
Seoul
Sochung Chung, 82-2-2030-7553, sochung@kuh.ac.kr
Kee-Ho Song
- Not yet recruiting
Korea University Guro Hospital
Seoul
Hyo-Kyoung Nam, 82-2-2626-1114, muguet@korea.ac.kr
Min Jeong Park
About this study
Official title: Transition of Care in Pediatric Rare Endocrine Disorders: Assessing Unmet Needs and Implementing a Standardized Transition Program
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.
Read the detailed description
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.
- Conditions
- Endocrine Disorder, Rare Disorders
- Being tested
- Structured Transition-of-Care Program
- Keywords
- Transition to adult care, Transition of care, Young adults, Endocrinology, Rare endocrine diseases, pediatric endocrinology
- Medical subject headings
- Endocrine System Diseases
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Structured Transition-of-Care ProgramBehavioural
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.
| Study group | Role | What they receive |
|---|---|---|
| Structured Transition-of-Care Program | Experimental | 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. Receives: Behavioral: Structured Transition-of-Care Program |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: Within 6 months after transfer to adult endocrinology care
Secondary outcomes (4)
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.
Measured: 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.
Measured: 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.
Measured: 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.
Measured: 12 months after the first adult endocrinology visi
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted25 Aug 2026
- Study start20 May 2026
- Primary completion31 Dec 2028 (estimated)
- Study completion31 Dec 2028 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Endocrine DisorderStudies of the same condition, open and under way.
- More trials run by Seoul National University HospitalThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Health services research
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Enrolment
- 150 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Seoul National University Hospital
- Sponsor type
- University, hospital or other
- Collaborators
- SNUH Lee Kun-hee Child Cancer & Rare Disease Project
- Responsible party
- Principal investigator, Yun Jeong Lee, Seoul National University Hospital
- Investigators
- Yun Jeong Lee, Principal investigator, Seoul National University Hospital
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07786142
- Sponsor's protocol ID
- 25C0710100
- Acronym
- TRANSPIRE
- Status last verified
- Aug 2026
- First submitted
- 21 Aug 2026
- Last updated
- 25 Aug 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- 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.
Study at a glance
From the registry record, last updated by the sponsor on 25 Aug 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Transition of Care in Pediatric Rare Endocrine Disorders: Assessing Unmet Needs and Implementing a Standardized Transition Program
- ClinicalTrials.gov ID
- NCT07786142
- Acronym / sponsor ID
- TRANSPIRE / 25C0710100
- Conditions
- Endocrine Disorder, Rare Disorders
- Keywords
- Transition to adult care, Transition of care, Young adults, Endocrinology, Rare endocrine diseases, pediatric endocrinology
- Study type
- Interventional
- Recruitment status
- Recruiting
- Enrolment
- 150 participants (estimated)
- Lead sponsor
- Seoul National University HospitalUniversity, hospital or other
- Collaborators
- SNUH Lee Kun-hee Child Cancer & Rare Disease Project
- Study start
- 20 May 2026 (actual)
- Primary completion
- 31 Dec 2028 (estimated)
- Study completion
- 31 Dec 2028 (estimated)
- First posted
- 25 Aug 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
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.
Study design
- Primary purpose
- Health services research
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Structured Transition-of-Care Program | Experimental | Behavioral: Structured Transition-of-Care ProgramParticipants 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. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (4 listed)
- 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.
Key exclusion criteria (1 listed)
- none
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Structured Transition-of-Care ProgramThe 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. | Behavioural | Structured Transition-of-Care Program |
Primary outcome
Proportion of Participants Successfully Transferred to Adult Endocrinology Care
Time frame: Within 6 months after transfer 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.
4 secondary outcomes
Change in Transition Readiness Assessment Questionnaire Score
Time frame: Baseline and at the first or second adult endocrinology visit after transfer
Change in Transition-Related Anxiety Score
Time frame: Baseline and at the first or second adult endocrinology visit after transfer
Participant Satisfaction With the Transition Process
Time frame: Baseline and at the first or second adult endocrinology visit after transfer
Retention in Adult Endocrinology Care at 12 Months
Time frame: 12 months after the first adult endocrinology visi
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 25 Aug 2026.
- Related InfoLink provided by the sponsor.
- Individual participant dataSharing planned: 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.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Yun Jeong Lee principal investigator
Seoul National University Hospital
11 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Structured Transition-of-Care Program in people with Endocrine Disorder and Rare Disorders, run by Seoul National University Hospital at 11 sites in South Korea.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 25 Aug 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 11 sites in South Korea. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Yun Jeong Lee (82-2-2072-2811, yjlee103@snu.ac.kr), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Proportion of Participants Successfully Transferred to Adult Endocrinology Care (time frame: Within 6 months after transfer to adult endocrinology care). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 25 Aug 2026.