Registry to Collect Health Information Related to Fibrolamellar Cancer

Brief Title

Registry to Collect Health Information Related to Fibrolamellar Cancer

Official Title

Fibrolamellar Carcinoma Global Dynamic Registry

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.
    



Study Type

Observational [Patient Registry]


Primary Outcome

Build a Fibrolamellar Cancer/FLC registry


Condition

Fibrolamellar Cancer

Intervention

Questionnaire

Study Arms / Comparison Groups

 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)

Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information


Recruitment Status

Behavioral

Estimated Enrollment

100

Start Date

April 30, 2021

Completion Date

April 30, 2023

Primary Completion Date

April 30, 2023

Eligibility Criteria

        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).
      

Gender

All

Ages

13 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Ghassan Abou-Alfa, MD, MBA, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT04874519

Organization ID

20-543


Responsible Party

Sponsor

Study Sponsor

Memorial Sloan Kettering Cancer Center


Study Sponsor

Ghassan Abou-Alfa, MD, MBA, Principal Investigator, Memorial Sloan Kettering Cancer Center


Verification Date

May 2021