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_______________________________________________________________________________________
| Formation | June 1, 2014 |
|---|---|
| Founder | ??? |
| Legal status | 501(c)(3) nonprofit organization |
| Focus | Fibrolamellar hepatocellular carcinoma |
| Dr. Sandy Simon | |
| Website | fibroregistry |
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
editThe 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]
In the News
editWhat's going on? Any big announcements?
Unrelated Foundations
editThe Fibrolamellar Registry is distinct from the Fibrolamellar Cancer Foundation (FCF) which was founded by Tucker Davis in 2009 with a focus on raising funds to support FLC research.[9]
References
edit- ^ Marcus, Gary (February 27, 2014). "Open-Sourcing a Treatment for Cancer". The New Yorker. ISSN 0028-792X. Retrieved September 24, 2024.
- ^ 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) - ^ 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) - ^ 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) - ^ 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) - ^ "Published Papers". The Fibrolamellar Registry. Retrieved September 24, 2024.
- ^ "Browse PubMed". The Fibrolamellar Registry. Retrieved September 24, 2024.
- ^ "Home". The Fibrolamellar Registry. Retrieved September 24, 2024.
- ^ Losert, Kurt (February 17, 2016). "Our Story and Mission". Fibrolamellar Cancer Foundation. Retrieved September 24, 2024.
External links
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