User:Simplebiologist
I work on making the language of science-related pages more accessible to the average reader. I also help design pages on large science topics that connect to more detailed pages.
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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
[edit]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]
In the News
[edit]What's going on? Any big announcements?
Unrelated Foundations
[edit]The 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
[edit] | This article about a philanthropic or charitable organization in the United States is a stub. You can help Wikipedia by expanding it. |