Manifesting and empowering data sharing for COVID-19 and beyond

Two favorite quotes are at the top of my mind this month: “Much is known, but unfortunately in different heads.” and “Be the change you want to see in the world.”

The first quote reminds us that the answers to the most complex questions require bringing together puzzle pieces held by different people — and that the more diverse those people are, the more complex the questions we can answer. This is one of NCATS’ fundamental operating principles and explains much of our outsized record of accomplishment. But in the face of the unprecedented global pandemic of COVID-19, we have again upped the ante on the ambitiousness of our sharing and teamwork. Last month, I wrote about new platforms that bring together information from within those “different heads” who then can analyze the information to produce insights into COVID-19. This month, I extend this theme with what we’re doing to accomplish close to real-time data sharing for COVID-19.

Because we’re in a global pandemic, the “up to 15 years” estimate to develop a new U.S. Food and Drug Administration (FDA)-approved drug from scratch is not an option. As a result, much attention has been given to drug repurposing, or using existing drugs in new ways. As soon as COVID-19 was identified, NCATS scientists turned our established drug repurposing platform to developing a broad array of assays, or tests, to identify drugs that could attack the virus in different ways and to screen them against our NCATS Pharmaceutical Collection. But we soon realized that these efforts were not enough: Researchers all over the world were developing such assays and doing such screens, but there was no way to share these data in real time to allow rapid identification of drugs that worked in multiple assays. So we created the NCATS OpenData Portal, a resource for scientists that allows COVID-19-related drug repurposing data and experiments for all approved drugs to be accessible and quickly shared. NCATS researchers have launched this platform with more than 10,000 compounds screened in many SARS-CoV-2-related assays. The Portal includes complete and detailed information on assays, protocols for using the assays, drug targets, mechanisms of drug action and screening assay data. These data, which include both positive and negative results, can be viewed, sorted, searched and exported from the Portal website. This is the first time any organization has made this kind of information publicly and immediately available, without waiting for publication. Most gratifyingly, our example has generated interest from researchers around the world who wish to contribute their unpublished data to the Portal, and we are working with them to do so as rapidly as possible.

The CURE ID(link is external) application, developed by NCATS and the FDA, supports a complementary “crowdsourcing” approach to identifying drugs that might be effective in treating COVID-19 by allowing clinicians to share their patient treatment experiences in real time. This week, a partnership with the Critical Path Institute was announced(link is external) that will greatly expand the reach and capacities of this groundbreaking platform.

Medical treatment of COVID-19 patients requires the same kind of sharing of data on the characteristics and clinical responses of patients with COVID-19. In my May message, I previewed the National COVID Cohort Collaborative (N3C) initiative — a massive team effort that is systematically collecting in a secure environment vast amounts of electronic health record data from across the nation, harmonizing it, and making it available for scientists nationwide to accelerate advances in COVID-19 research and clinical care. We are capturing individual and patient experiences to determine what predicts good or bad outcomes for patients, which drugs might work better than others, and the long-term consequences of infection. Just since last month, 45 collaborating sites across the country have joined the effort and the platform now contains diverse data from thousands of individuals tested for COVID-19. As stewards of the data, NCATS is providing rapid access to patient data to address the pandemic while also protecting patient information and privacy. For more information, including FAQs, ways to participate, funding opportunities and a demonstration of the platform, visit https://ncats.nih.gov/n3c.

Through these efforts and others, NCATS is “being the change we want to see in the world,” leading the way to more open and collaborative efforts that are enhancing the efficiency of translation, and improving health in the COVID-19 pandemic. Stay tuned for more information on our efforts to maximize the impact of these programs and perpetuate the culture of sharing as an accelerant to progress in all diseases and public health crises.