NCATS director discusses center's data-focused approach to COVID-19

In a May 29 blog post, the director of the National Center for Advancing Translational Sciences (NCATS) detailed two new COVID-19 data integration projects that illustrate the power of the center's data-centric approach to the pandemic.

"One key to data integration is having the tools to bring it together and analyze it," wrote Christopher P. Austin, MD. "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."

The two projects described in the blog involve the National COVID Cohort Collaborative (N3C) and the Rare Diseases Clinical Research Network (RDCRN).

The N3C is a team of hundreds of experts working 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 COVID-19 scientists and clinicians nationwide. New contributing collaborators are welcome, and data provision is open to all entities under the NCATS Data Transfer Agreement (DTA). Guidance documents and instructions on how to request access to data will be 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 patients affected by rare diseases. COVID-19 presents more challenges for these individuals than for the general public; these challenges can include heightened disease vulnerability, potential reduced access to needed medical care, and added anxiety and stress. To help respond to this population's current needs and plan future research, the RDCRN launched an online research survey on April 30 to collect structured data on how the pandemic is affecting individuals with rare diseases, their families and their caregivers.

The survey was inspired by 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 on behalf of 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

Read more: https://ncats.nih.gov/director