Opening up information is one of the keys to a concerted and effective response to the COVID-19 Pandemic. We need to make sure that insights from the world-wide treatment efforts are discovered quickly and shared widely to ensure effective preventions and treatments spread. A case in point on the power of coordinating and sharing medical information comes from the Castleman’s Collaborative, illustrating how open processes and open resources can be an asset to humanity in this global health crisis.
“Doing in a year what often takes a decade.1“ I recently caught Terry Gross’ interview with David Fajgenbaum on Fresh Air about ‘crowdsourcing’ a cure for Castleman’s disease, which he suffers from. It’s a great listen. Castleman’s is a deadly disease for which little is known because of its rarity and the dispersal of cases. Luckily for the world, Fejgenbaum was in medical school when he had his first attack and, because he was close to finishing his medical degree, he began researching. He discovered that little coordinated information and study was available. The Castleman’s Collaborative, https://cdcn.org/, has come up with an eight step research process that is crowdsourced, prioritized, funded, executed, and published (almost all freely available). Much of the research targets off-label use of FDA-approved drugs, since development of specifically targeted new drugs is prohibitively expensive and time consuming, but many, many drugs already exist and might be effective. While, individually, rare diseases impact few people, cumulatively, many many rare conditions impact large numbers of people, and so applying this collaborative method can be tremendously impactful.
They are applying the same collaborative method to COVID19 treatment: The Castleman Collaborative is now applying the methodology to COVID19, https://cdcn.org/corona/. Their first step is compiling a database of off-label use of drugs to treat COVID19 symptoms, aptly named CORONA for COvid19 Registry of Off-label & New Agents. Having that database openly available to those around the world who are researching treatments helps prevent duplication, combine efforts in the medical community, and lets researchers and practitioners build on each other’s knowledge, which has always been the promise and practice of science.
‘Open’ is a critical tool for solving hard, global problems. Open resources (education, data, software) and collaborative processes are unique in their ability to pivot to address new crises and public concerns, because they remove barriers to building on previous work and disseminating knowledge quickly and widely. In the case of the pandemic, this gives open collaboration a fighting chance against the virus, which also spreads widely and builds on its own infectious success. My day job is helping students learn and achieve by building effective products, which also benefits from and is accelerated by open content, open research, and collaborative team processes. My interest in open software started in graduate school and the more I learn, the more I believe in its potential to help the world. In this global health crisis, open solutions are continuing to establish themselves as an integral part of the thriving open software ecosystem that I am proud to be a part of.
1 From the Castleman Collaborative website, July 6, 2020