Draft:Fibrolamellar Registry
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| Submission declined on 2 July 2024 by SafariScribe (talk). This draft's references do not show that the subject qualifies for a Wikipedia article. In summary, the draft needs multiple published sources that are:
This submission does not appear to be written in the formal tone expected of an encyclopedia article. Entries should be written from a neutral point of view, and should refer to a range of independent, reliable, published sources. Please rewrite your submission in a more encyclopedic format. Please make sure to avoid peacock terms that promote the subject. Declined by SafariScribe 35 days ago. | |
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Comment: Wikipedia:Wikipedia is not here to tell the world about your noble cause is applicable here. Theroadislong (talk) 20:51, 16 April 2024 (UTC)
The Fibrolamellar Registry is a 501(c)(3) non-profit organization in the United States established by patients and family members of patients with Fibrolamellar Hepatocellular Carcinoma (FLC) to bring together patients, family members, scientists and clinicians. http://www.fibroregistry.org. The goals are to both make the science available for the patients and patients available for the science. The governance of the Fibrolamellar Registry is by patients and family members, and is not affiliated with one hospital [1].[2]
Activities
[edit]One major activity is making science accessible to the patients. The Fibrolamellar Registry has plain language summaries of science articles about fibrolamellar (https://fibroregistry.org/published-papers/ ). There is also a video tutorial on how to search PubMed (https://fibroregistry.org/browse-pubmed/), a site developed by the NIH to make the published science literature available for all, as well as videos explaining some of the science articles.
Another major activity is to make data on fibrolamellar carcinoma available for a wider research clinical community. The Fibrolamellar Registry, started with the creation of a questionnaire with 600 queries that go beyond the standard health record. In 2022 the data was migrated over to RedCap to increase its accessibility. As a result of being run by patients and not a single medical institution, the registry follows patient outcomes, even when the patient transfers institutions and/or clinical assessment is complete. This allows studies of longer term outcomes. As a result of following patients for longer periods, the data can be edited to include potential subsequent re-evaluation of diagnosis and/or additional molecular characterization. At the core of the registry database is a collection of hundreds of questions designed by patients and family members, with input from oncologists, surgeons, pathologists, and hepatologists. The comprehensive questionnaire goes far beyond questions covered in standard medical records. The core is currently expanding to start including data from the patient health records.
Accomplishments
[edit]The Fibrolamellar registry now has data on 250 patients from over 20 countries. Based on data in the registry, four articles were published in 2022-2023 in peer reviewed science journals.
The data in the Fibrolamellar Registry was used for a deep dive into a study of the outcomes of fibrolamellar patients in "Clinical and demographic predictors of survival for fibrolamellar carcinoma patients-A patient community, registry-based study", by Amichai Berkovitz.[1]
A specific kind of immunological intervention is called “Immune checkpoint inhibitors”. Response to a request from the fibrolamellar registry identified 30 patients, across institutions, who had received these treatments. The Registry de-identified the records and provided them to a team of radiologists and oncologists for assessment. Dr. Mark Yarchoan, of the Johns Hopkins Medical Institute, headed the study that was published in "Clinical Outcomes in Fibrolamellar Hepatocellular Carcinoma Treated with Immune Checkpoint Inhibitors".[3]
Many fibrolamellar patients are affected by high levels of ammonia. High ammonia can lead to confusion, or even coma and/or death. The Fibrolamellar registry put out a call to patients who had problems with high ammonia. The results contributed to a study of the changes in the proteins and metabolism of fibrolamellar in “Disruption of proteome by an oncogenic fusion kinase alters metabolism in fibrolamellar hepatocellular carcinoma” by Solomon Levin, et al.[4]
To bring a new drug to the clinic can take a long time requiring extensive studies in other animals, preclinical studies, and then safety studies in other animals and then humans. One faster route to bring drugs to the clinical to treat a disease is to do functional studies to find drugs that can be “repurposed”. Such a drug-repurposing screen found success for a number of therapeutics that was not previously predicted.[5] A follow-up study found specific combinations of drugs that were effective on tumors of fibrolamellar hepatocellular carcinoma that were implanted in mice. From an exploration of the Fibrolamellar Registry it was found that some patients had received some of these agents in single isolated tests. The results from The Fibrolamellar Registry supported the results from the studies in mice, and were included in a publication: "Targeting BCL-XL in fibrolamellar hepatocellular carcinoma" by Shebl et al. [6] The work is currently being developed for a clinical trial.
Some of the advantages of patient/family based medical registries, using the Fibrolamellar Registry as an example, were highlighted in Nature Reviews Cancer in an article entitled: “Fighting Rare Cancers: Lessons from fibrolamellar hepatocellular carcinoma”.[2]
External Links
[edit]Legal Status: 501(c)(3) nonprofit organization
References
[edit]- ^ a b Berkovitz, Amichai; Migler, Rachael D.; Qureshi, Adam; Rosemore, Carly; Torbenson, Michael S.; Vaughan, Roger; Marcotte, Erin; Simon, Sanford M. (December 2022). "Clinical and demographic predictors of survival for fibrolamellar carcinoma patients—A patient community, registry-based study". Hepatology Communications. 6 (12): 3539–3549. doi:10.1002/hep4.2105. ISSN 2471-254X. PMC 9701473. PMID 36245434.
- ^ a b Simon, Sanford M. (May 2023). "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. PMC 10022574. PMID 36932129.
- ^ 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 (January 2022). "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.
- ^ 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. (2023-06-23). "Disruption of proteome by an oncogenic fusion kinase alters metabolism in fibrolamellar hepatocellular carcinoma". Science Advances. 9 (25): eadg7038. Bibcode:2023SciA....9G7038L. doi:10.1126/sciadv.adg7038. ISSN 2375-2548. PMC 10284549. PMID 37343102.
- ^ Lalazar, Gadi; Requena, David; Ramos-Espiritu, Lavoisier; Ng, Denise; Bhola, Patrick D.; de Jong, Ype P.; Wang, Ruisi; Narayan, Nicole J.C.; Shebl, Bassem; Levin, Solomon; Michailidis, Eleftherios; Kabbani, Mohammad; Vercauteren, Koen O.A.; Hurley, Arlene M.; Farber, Benjamin A. (2021-06-14). "Identification of Novel Therapeutic Targets for Fibrolamellar Carcinoma Using Patient-Derived Xenografts and Direct-from-Patient Screening". Cancer Discovery. 11 (10): 2544–2563. doi:10.1158/2159-8290.cd-20-0872. ISSN 2159-8274. PMC 8734228. PMID 34127480.
- ^ 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 (2022-09-08). "Targeting BCL-XL in fibrolamellar hepatocellular carcinoma". JCI Insight. 7 (17). doi:10.1172/jci.insight.161820. ISSN 0021-9738. PMC 9536265. PMID 36073545.