Registry to Collect Health Information Related to Fibrolamellar Cancer

Fibrolamellar Carcinoma Global Dynamic Registry

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT04874519

Enrollment

Registered

2021-05-05

Start date

2021-11-24

Completion date

2025-11-10

Last updated

2025-11-12

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Fibrolamellar Cancer, FLC, Liver Cancer

Keywords

fibrolamellar cancer, liver cancer, 20-543, Memorial Sloan Kettering Cancer

Brief summary

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.

Interventions

BEHAVIORALQuestionnaire

The questionnaire will be completed at the time of enrollment, every month, and at the end of study. Regardless of current interventions or lack of, assessments will be completed at enrollment and then monthly for a total of 18 months. In order to provide reasonable flexibility to participants, physicians, and study teams, the assessments can be completed within 30 days of the last assessment. The next month will be recalculated based on last reporting date.

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

13 Years to No maximum

Healthy volunteers

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).

Design outcomes

Primary

Measure	Time frame	Description
Build a Fibrolamellar Cancer/FLC registry	18 months	To build a registry of Fibrolamellar Cancer/FLC through patient reported information, that could be studied further in future studies.

Countries

United States

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026