The Fibrolamellar Registry is a
501(c)(3)
A 501(c)(3) organization is a United States corporation, Trust (business), trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of ...
non-profit organization
A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...
in the
United States
The United States of America (USA), also known as the United States (U.S.) or America, is a country primarily located in North America. It is a federal republic of 50 U.S. state, states and a federal capital district, Washington, D.C. The 48 ...
established to bring together patients with
Fibrolamellar carcinoma (FLC) and their families along with scientists and clinicians to achieve the goal of developing a diagnostic test and cure. Since FLC is a rare pediatric liver cancer, the Fibrolamellar Registry helps connect data across institutions and hospitals. The Fibrolamellar Registry does not fundraise for research.
History
The Registry was established in 2014 by Elana Simon along with other FLC survivors as an open-sourced data repository. The Registry is governed by patients and their families. Researchers and clinicians are allowed to use the collected data for free to advance understanding of FLC.
The Registry uses a questionnaire with 600 questions, which go beyond the
standard medical record to supply a rich data set for researchers and clinicians to use. The data from the Registry was used to support three research articles published in 2022 and another published in 2023.
In addition to providing data to support new research, the Registry helps patients with FLC understand their disease through plain language summaries of new research papers and tutorials on how to properly search the online biomedical database
PubMed
PubMed is an openly accessible, free database which includes primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine (NLM) at the National Institute ...
.
As of 2024, the Registry has 250 participants from 21 countries which represents over 100,000 data points.
Significance
The Fibrolamellar Registry is one of the first registries run by patients and their families rather than hospitals or universities. As such, the Registry has served as a model for patient-run registries for other rare cancers such as
uveal melanoma
Uveal melanoma is a type of eye cancer in the uvea of the eye. It is traditionally classed as originating in the iris, choroid, and ciliary body, but can also be divided into class I (low metastatic risk) and class II (high metastatic risk). S ...
. The Registry has also connected patients directly with researchers, which has allowed some patients to research their own cancers in the lab.
References
External links
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Cancer foundations
Max Burdette Fibrolamellar Cancer ResearchDeLiver a Cure for Fibrolamellar Hepatocellular CarcinomaRockefeller University Fibrolamellar FundFibrolamellar Cancer Foundation
Rhodes Cancer Foundation
which supports patient services.
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Medical research organizations