Clinical trial · Observational
Registry to Collect Health Information Related to Fibrolamellar Cancer
Fibrolamellar Carcinoma Global Dynamic Registry
NCT04874519CI-TRIAL-00097138completedClinicalTrials.gov clinicaltrialsProvenance
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
The purpose of this study is to collect information about people with fibrolamellar cancer (FLC). This study is a registry of people with FLC around the world. This study will involve collecting information about participants, their medical history and the regular medical care they receive for FLC. The study will not provide treatment for your cancer.
Conditions
Conditions (3)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Fibrolamellar Cancer | Fibrolamellar Carcinoma | CURATED_BROADER | 0.80 |
| FLC | Fibrolamellar Carcinoma | ALIAS | 0.90 |
| Liver Cancer | Malignant Liver Neoplasm | CURATED_EXACT | 0.92 |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Questionnaire | Behavioral | — | UNRESOLVED |
Design
Arms and outcomes
Arms (1)
- label
- Participants with Fibrolamellar Carcinoma/FLC
- description
- Participants will have a personal history of histologically proven fibrolamellar carcinoma (clinical or radiographical suspicion of FLC must be confirmed at MSK or an external hospital)
- interventionNames
- Behavioral: Questionnaire
Primary outcomes (1)
- measure
- Build a Fibrolamellar Cancer/FLC registry
- timeFrame
- 18 months
- description
- To build a registry of Fibrolamellar Cancer/FLC through patient reported information, that could be studied further in future studies.
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 13 Years
Show eligibility criteria text
Inclusion Criteria: * Age 13 years or older. * Personal history of histologically proven fibrolamellar carcinoma (clinical or radiographical suspicion of FLC must be confirmed at MSK or an external hospital) * Participants must have access to electronic devices that meet the following minimum requirements: * Ability to connect to the internet * Capability of running modern internet browers (such as Google Chrome, Internet Explorer, Safari, or Mozilla Firefox). * Participants must have a google account Exclusion Criteria: * Participants residing in the European Union (EU).
References
Publications (0)
Data not yet available
No reference posted for this study.