Fibrolamellar Registry

The Fibrolamellar Registry is a 501(c)(3) non-profit organization in the United States 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.^{[citation needed]} The Fibrolamellar Registry does not fundraise for research.

Fibrolamellar Registry

Formation	June 1, 2014; 11 years ago (2014-06-01)
Founder	Barbara Lyons, Rachael Migler, Elana Simon, Sanford Simon, Gail Trecosta
Legal status	501(c)(3) nonprofit organization
Focus	Fibrolamellar hepatocellular carcinoma
Chairman,President	Dr. Sandy Simon
Website	fibroregistry.org//

History

The Registry was established in 2014 by Elana Simon along with other FLC survivors as an open-sourced data repository.^[1] 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^[2][3][4] and another published in 2023.^[5]

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^[6] and tutorials on how to properly search the online biomedical database PubMed.^[7]

As of 2024, the Registry has 250 participants from 21 countries which represents over 100,000 data points.^[8]

Significance

The Fibrolamellar Registry is one of the first registries run by patients and their families rather than hospitals or universities.^[9] As such, the Registry has served as a model for patient-run registries for other rare cancers such as uveal melanoma.^[10] The Registry has also connected patients directly with researchers, which has allowed some patients to research their own cancers in the lab.^[11][12]