Rare CancerrarecancerNCT06746766
Registry Study on Rare Cancers in Korea
An observational study of Rare Cancer, run by Yonsei University at 1 site in South Korea.
Trial summary
This study aims to determine the participation rate of patients with registered rare cancers in clinical research. Read more about this study
- Who is it for?
- Ages 19 years and older
- Conditions the study is for
- Rare Cancer
- How many people
- 500 participants
- Where
- 1 siteSouth Korea
- Study dates
- 18 Nov 2024to 1 Dec 2027
- How long will I take part?
- 5 Years
- Phase
- Observational
- 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 19 years and older
- All sexes
- No healthy volunteers
- Adult, Older 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)
Who may be able to join
- Adults aged ≥19 years
- Confirmed rare cancer
- Life expectancy ≥3 months
Who cannot join
- -Serious or unstable medical/psychiatric conditions
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
About this study
This study aims to determine the participation rate of patients with registered rare cancers in clinical research.
Read the 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)
- Conditions
- Rare Cancer
- Keywords
- Rare Cancer
What is being measured
The primary outcome is the main question the study is designed to answer.
Establish a registry
Establish a registry of rare cancer patients visiting the institution
Measured: 1 year
Secondary outcomes (1)
Clinical trial registration rate (%)
Clinical trial registration rate (%)
Measured: 1 year
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted24 Dec 2024
- Study start18 Nov 2024
- Primary completion1 Dec 2027 (estimated)
- Study completion1 Dec 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (3)Papers the sponsor has linked to this study.
- Other trials for Rare CancerStudies of the same condition, open and under way.
- More trials run by Yonsei UniversityThe 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
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 500 participants (estimated)
- Target duration
- 5 Years
Sponsor and investigators
- Lead sponsor
- Yonsei University
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Hyo Song Kim, Yonsei University
- Investigators
- Hyo Song Kim, MD, Ph.D, Principal investigator, Yonsei Cencer center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06746766
- Sponsor's protocol ID
- 4-2024-1207
- Other IDs
- 4-2024-1207
- Acronym
- rarecancer
- Status last verified
- Apr 2026
- First submitted
- 9 Dec 2024
- Last updated
- 30 Apr 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Publications
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.
PubMed 20824452Very rare cancers--a problem neglected. Lancet Oncol. 2001 Apr;2(4):189. doi: 10.1016/s1470-2045(00)00273-4. No abstract available.
PubMed 11905758Pritchard-Jones K, Kaatsch P, Steliarova-Foucher E, Stiller CA, Coebergh JW. Cancer in children and adolescents in Europe: developments over 20 years and future challenges. Eur J Cancer. 2006 Sep;42(13):2183-90. doi: 10.1016/j.ejca.2006.06.006.
PubMed 16919780
Study at a glance
From the registry record, last updated by the sponsor on 30 Apr 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Registry Study on Rare Cancers in Korea
- ClinicalTrials.gov ID
- NCT06746766
- Acronym / sponsor ID
- rarecancer / 4-2024-1207
- Conditions
- Rare Cancer
- Keywords
- Rare Cancer
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 500 participants (estimated)
- Lead sponsor
- Yonsei UniversityUniversity, hospital or other
- Study start
- 18 Nov 2024 (actual)
- Primary completion
- 1 Dec 2027 (estimated)
- Study completion
- 1 Dec 2027 (estimated)
- First posted
- 24 Dec 2024 (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 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)
Study design
- Observational model
- Other
- Time perspective
- Prospective
- Target follow-up
- 5 Years
Who may qualify
- Ages
- 19 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older 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)
Key inclusion criteria (3 listed)
- Adults aged ≥19 years
- Confirmed rare cancer
- Life expectancy ≥3 months
Key exclusion criteria (1 listed)
- -Serious or unstable medical/psychiatric conditions
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Establish a registry
Time frame: 1 year
Establish a registry of rare cancer patients visiting the institution
1 secondary outcome
Clinical trial registration rate (%)
Time frame: 1 year
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 30 Apr 2026.
- Background: PubMed 20824452Gatta 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.
- Background: PubMed 11905758Very rare cancers--a problem neglected. Lancet Oncol. 2001 Apr;2(4):189. doi: 10.1016/s1470-2045(00)00273-4. No abstract available.
- Background: PubMed 16919780Pritchard-Jones K, Kaatsch P, Steliarova-Foucher E, Stiller CA, Coebergh JW. Cancer in children and adolescents in Europe: developments over 20 years and future challenges. Eur J Cancer. 2006 Sep;42(13):2183-90. doi: 10.1016/j.ejca.2006.06.006.
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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.
Hyo Song Kim, MD, Ph.D principal investigator
Yonsei Cencer center
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Rare Cancer, run by Yonsei University at 1 site 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 3 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 30 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site 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 Hyo Song Kim, MD, Ph.D (82-2-2228-8124, hyosong77@yuhs.ac), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Establish a registry (time frame: 1 year). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT06746766, which also lists 3 linked publications.
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 30 Apr 2026.