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Fibrolamellar Registry
FormationJune 1, 2014; 12 years ago (2014-06-01)
FounderBarbara Lyons, Rachael Migler, Elana Simon, Sanford Simon, Gail Trecosta
Legal status501(c)(3) nonprofit organization
FocusFibrolamellar hepatocellular carcinoma
Dr. Sandy Simon
Websitefibroregistry.org//

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.

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 and researchers which has allowed some patients to research their own cancers in the lab.[11][12]

Unrelated Foundations

The Fibrolamellar Registry is distinct from other foundations and groups that focus on Fibrolamellar carcinoma, such as the Max Burdette Fibrolamellar Cancer Research, DeLiver a Cure for Fibrolamellar Hepatocellular Carcinoma, the Rockefeller University Fibrolamellar Fund, and the Fibrolamellar Cancer Foundation that fund-raise to support research. It is also distinct from the Rhodes Cancer Foundation, that supports patient services. 

The Fibrolamellar Registry does not fundraise for research.

References

  1. ^ Marcus, Gary (February 27, 2014). "Open-Sourcing a Treatment for Cancer". The New Yorker. ISSN 0028-792X. Retrieved September 24, 2024.
  2. ^ Shebl, Bassem; Ng, Denise; Lalazar, Gadi; Rosemore, Carly; Finkelstein, Tova M.; Migler, Rachael D.; Zheng, Guangrong; Zhang, Peiyi; Jiang, Caroline S.; Qureshi, Adam; Vaughan, Roger; Yarchoan, Mark; Jong, Ype P. de; Rice, Charles M.; Coffino, Philip (September 8, 2022). "Targeting BCL-XL in fibrolamellar hepatocellular carcinoma". JCI Insight. 7 (17). doi:10.1172/jci.insight.161820. ISSN 0021-9738. PMC 9536265. PMID 36073545.{{cite journal}}: CS1 maint: PMC format (link)
  3. ^ Berkovitz, Amichai; Migler, Rachael D.; Qureshi, Adam; Rosemore, Carly; Torbenson, Michael S.; Vaughan, Roger; Marcotte, Erin; Simon, Sanford M. (2022-12). "Clinical and demographic predictors of survival for fibrolamellar carcinoma patients—A patient community, registry‐based study". Hepatology Communications. 6 (12): 3539. doi:10.1002/hep4.2105. ISSN 2471-254x. PMC 9701473. PMID 36245434. {{cite journal}}: Check |issn= value (help); Check date values in: |date= (help)CS1 maint: PMC format (link)
  4. ^ Chen, Krista Y.; Popovic, Aleksandra; Hsiehchen, David; Baretti, Marina; Griffith, Paige; Bista, Ranjan; Baghdadi, Azarakhsh; Kamel, Ihab R.; Simon, Sanford M.; Migler, Rachael D.; Yarchoan, Mark (2022-01). "Clinical Outcomes in Fibrolamellar Hepatocellular Carcinoma Treated with Immune Checkpoint Inhibitors". Cancers. 14 (21): 5347. doi:10.3390/cancers14215347. ISSN 2072-6694. PMC 9655068. PMID 36358766. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  5. ^ Levin, Solomon N.; Tomasini, Michael D.; Knox, James; Shirani, Mahsa; Shebl, Bassem; Requena, David; Clark, Jackson; Heissel, Søren; Alwaseem, Hanan; Surjan, Rodrigo; Lahasky, Ron; Molina, Henrik; Torbenson, Michael S.; Lyons, Barbara; Migler, Rachael D. (June 23, 2023). "Disruption of proteome by an oncogenic fusion kinase alters metabolism in fibrolamellar hepatocellular carcinoma". Science Advances. 9 (25). doi:10.1126/sciadv.adg7038. ISSN 2375-2548. PMC 10284549. PMID 37343102.{{cite journal}}: CS1 maint: PMC format (link)
  6. ^ "Published Papers". The Fibrolamellar Registry. Retrieved September 24, 2024.
  7. ^ "Browse PubMed". The Fibrolamellar Registry. Retrieved September 24, 2024.
  8. ^ "Home". The Fibrolamellar Registry. Retrieved September 24, 2024.
  9. ^ Marcus, Gary (February 27, 2014). "Open-Sourcing a Treatment for Cancer". The New Yorker. ISSN 0028-792X. Retrieved January 19, 2025.
  10. ^ "Progress in Rare Cancers". Cancer Today. Retrieved January 19, 2025.
  11. ^ Simon, Sanford M. (2023-05). "Fighting rare cancers: lessons from fibrolamellar hepatocellular carcinoma". Nature Reviews Cancer. 23 (5): 335–346. doi:10.1038/s41568-023-00554-w. ISSN 1474-1768. {{cite journal}}: Check date values in: |date= (help)
  12. ^ "Seek - Lab Partners". seek.rockefeller.edu. Retrieved January 19, 2025.
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