Registry to Collect Health Information Related to Fibrolamellar Cancer

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.

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Key information

Conditions

Fibrolamellar Cancer Digestive System Diseases Digestive System Neoplasms FLC Fibrolamellar hepatocellular carcinoma Liver Cancer Liver Diseases Liver Neoplasms Neoplasms Neoplasms by Site

Age range

13 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Memorial Sloan Kettering Cancer Center (All Protocol Activities)

New York, 10065, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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).

Treatment and study plan

Questionnaire

Behavioral

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.

Primary outcomes

Build a Fibrolamellar Cancer/FLC registry

Time frame: 18 months

To build a registry of Fibrolamellar Cancer/FLC through patient reported information, that could be studied further in future studies.

Sponsors and collaborators

Lead sponsor

Memorial Sloan Kettering Cancer Center

Other

Registry information

Official study title

Fibrolamellar Carcinoma Global Dynamic Registry

Important dates

Study start: 2021
Primary completion: 2025
Study completion: 2025
First posted: May 5, 2021
Registry last updated: Nov 12, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting