Registry to Collect Health Information Related to Fibrolamellar Cancer

Active, not recruiting

• Conditions: FLC; Liver Cancer; Fibrolamellar Cancer
• Interventions: Behavioral: Questionnaire

• Registration Number: NCT04874519
• Lead Sponsor: Memorial Sloan Kettering Cancer Center

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.

Detailed Description

Not available

Study Timeline

• Study First Submitted: 2021-05-03
• Study First Submitted QC: 2021-05-03
• Study First Posted: 2021-05-05
• Study Start: 2021-11-24
• Status Verified: 2025-05
• Last Update Submitted: 2025-05-14
• Last Update Posted: 2025-05-18
• Primary Completion: 2026-04-30
• Study Completion: 2026-04-30

Recruitment & Eligibility

• Status: ACTIVE_NOT_RECRUITING
• Sex: All
• Target Recruitment: 100

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).

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Participants with Fibrolamellar Carcinoma/FLC	Questionnaire	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)

Primary Outcome Measures

Name	Time	Method
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.

Trial Locations

Locations (1)

Memorial Sloan Kettering Cancer Center (All Protocol Activities); 🇺🇸 New York, New York, United States