Registry Study on Rare Cancers in Korea | NCT06746766

Studies
Registry Study on Rare Cancers in Korea

NCT06746766

Sponsor

Yonsei University

Status

Recruiting

Last Update Posted

Apr 30, 2026Actual

Enrollment

500Estimated

Phase

Not provided

Conditions

Rare Cancer

Interventions

Not provided

Countries

South Korea

Protocol Section

Identification Module Status Module Sponsor/Collaborators Module Oversight Module Description Module Conditions Module Design Module Arms/Interventions Module Outcomes Module Eligibility Module Contacts/Locations Module References Module IPD Sharing Statement Module

Results Section

Participant Flow Module Baseline Characteristics Module Outcome Measures Module Adverse Events Module More Info Module

Annotation Section

Annotation Module

Document Section

Large Document Module

Derived Section

Miscellaneous Info Module Condition Browse Module Intervention Browse Module

Protocol Section

Identification Module

NCT ID

Results Section

No data available

No data is available for this block.

Annotation Section

No data available

No data is available for this block.

Document Section

No data available

No data is available for this block.

Derived Section

Miscellaneous Info Module

Version Holder

ID	Type	Description	Link
4-2024-1207	Other Identifier	Severance Hospital, IRB

Status Module

Record Verification Date

Apr 2026

Overall Recruitment Status or Expanded Access Status

Recruiting

Last Known Status

Not provided

Delayed Posting

Not provided

Why Stopped

Not provided

Expanded Access Info

Start Date

Nov 18, 2024Actual

Primary Completion Date

Dec 1, 2027Estimated

Completion Date

Dec 1, 2027Estimated

First Submitted Date

Dec 9, 2024

First Submission Date that Met QC Criteria

Dec 17, 2024

First Posted Date

Dec 24, 2024Actual

Results Waived

Not provided

Results First Submitted Date

Not provided

Results First Submitted that Met QC Criteria

Not provided

Results First Posted Date

Not provided

Certification/Extension (aka Delayed Results) First Submitted Date

Not provided

Certification/Extension First Submitted that Passed QC Review

Not provided

Certification/Extension First Posted Date

Not provided

Last Update Submitted Date

Apr 27, 2026

Last Update Posted Date

Apr 30, 2026Actual

Oversight Module

Has Data Monitoring Committee (DMC)

Not provided

Is FDA Regulated Drug

Is FDA Regulated Device

Is Unapproved Device

Not provided

Pediatric Postmarket Surveillance of a Device Product

Not provided

Product Exported from US

Not provided

FDAAA801 Violation

Not provided

Description Module

Brief Summary

This study aims to determine the participation rate of patients with registered rare cancers in clinical research.

Detailed Description

Data collection includes:

Clinical characteristics (diagnosis, treatment information, primary/metastatic sites, staging, gender/age)
Survival information (diagnosis date, recurrence date, death date, disease progression)
Pathological information (diagnosis, genomic information)

Design Module

Study Type

Observational

Number of References to an Expanded Access Study

Not provided

Expanded Access Types

Not provided

Patient Registry

Yes

Target Follow-Up Duration

5 Years

Phases

Not provided

Interventional Study Design

Allocation

Not provided

Intervention Model

Biospecimen

No data available

No data is available for this block.

Enrollment

500Estimated

Outcomes Module

Primary Outcomes

Measure	Description	Time Frame
Establish a registry	Establish a registry of rare cancer patients visiting the institution	1 year

Secondary Outcomes

Measure	Description	Time Frame
Clinical trial registration rate (%)	Clinical trial registration rate (%)	1 year

Other Outcomes

Not provided

Eligibility Module

Eligibility Criteria

Inclusion Criteria:

Adults aged ≥19 years
Confirmed rare cancer
Life expectancy ≥3 months

Exclusion Criteria:

-Serious or unstable medical/psychiatric conditions

Accepts Healthy Volunteers

Sex

All

Sex/Gender Based

Not provided

Sex/Gender Description

Not provided

Minimum Age

19 Years

Maximum Age

Not provided

Standard Ages

AdultOlder Adult

Study Population

Data collection includes:

Clinical characteristics (diagnosis, treatment information, primary/metastatic sites, staging, gender/age)
Survival information (diagnosis date, recurrence date, death date, disease progression)
Pathological information (diagnosis, genomic information)

Sampling Method

Non-Probability Sample

Contacts/Locations Module

Central Contacts

Name	Role	Phone	Extension	Email
Hyo Song Kim, MD, Ph.D	Contact	82-2-2228-8124		hyosong77@yuhs.ac

Overall Officials

Name	Affiliation	Role
Hyo Song Kim, MD, Ph.D	Yonsei Cencer center	Principal Investigator

Locations

Facility	Status	City	State	ZIP	Country	Contacts
Severance Hospital	Recruiting	Seoul		03722	South Korea

References Module

Citations

PubMed Identifier	Type	Citation	Retractions
20824452	Background	Gatta G, Capocaccia R, Trama A, Martinez-Garcia C; RARECARE Working Group. The burden of rare cancers in Europe. Adv Exp Med Biol. 2010;686:285-303. doi: 10.1007/978-90-481-9485-8_17.
11905758	Background	Very rare cancers--a problem neglected. Lancet Oncol. 2001 Apr;2(4):189. doi: 10.1016/s1470-2045(00)00273-4. No abstract available.