Director’s Corner

May 29, 2020: Creating the data platforms needed to guide our response to COVID-19

Christopher Austin

NCATS is an integrator, bringing together diverse people, technologies, and information to produce insights and advances that no one could do alone. This modus operandi is never more important than in an urgent public health crisis like the COVID-19 pandemic, when data often are limited, and the scientific and medical situation is changing rapidly.

One key to data integration is having the tools to bring it together and analyze it. For this reason, NCATS has invested heavily in data science and health informatics in all its programs, as well as in creating a culture of data sharing and open science that allows this integration. Two remarkable new COVID-19 data integration projects illustrate the enormous power of this approach. 

The National COVID Cohort Collaborative (N3C) is a massive team effort involving hundreds of experts working together to create a clinical data analytics platform to systematically collect vast amounts of electronic health record data from different sources across the nation, harmonize it, and make it available for scientists nationwide to accelerate advances in COVID-19 research and clinical care. New contributing collaborators are welcome, and data provision is open to all entities that execute the NCATS Data Transfer Agreement (DTA). Guidance documents and instructions on how to request access to data (e.g., the NCATS Data Use Agreement) are forthcoming. For more information about N3C, including FAQs and funding details, visit https://ncats.nih.gov/n3c.

A very different data collection effort is aimed at helping those affected by rare diseases. For people with rare diseases, COVID-19 presents particular challenges, including heightened disease vulnerability, potential reduced access to needed medical care, and added anxiety and stress. To gain a better understanding of these challenges and help respond to current needs and plan future research, the Rare Diseases Clinical Research Network (RDCRN) launched an online research survey on April 30, 2020, to collect structured data on how the COVID-19 pandemic is affecting individuals with rare diseases, their families and their caregivers. Importantly, the idea for the survey began with conversations among RDCRN researchers and patient leaders who were hearing similar concerns across different rare diseases. In response, the survey was launched quickly, showing how the research consortia (clinical sites) and patient groups are able to work together as a network to make a difference for the entire rare diseases community. To date, more than 2,300 respondents have completed the survey, which closes July 31. More information, including how to participate, can be found at https://www.rarediseasesnetwork.org/COVIDsurvey.

In related news, NCATS debuted new web pages this month that highlight examples of how NCATS is bringing our translational science approach to addressing COVID-19. Please visit these pages to reach the N3C, the rare diseases survey, and many other COVID-19 programs and resources. 

Until next month, please stay distanced, stay healthy and keep in touch.

Christopher P. Austin, M.D.
Director
National Center for Advancing Translational Sciences