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Data harmonization and sharing are essential for COVID-19 research

Lis Nielsen
Division Director,
Division of Behavioral and Social Research (DBSR)
Dr. Ken Santora
Kenneth SANTORA,
Division of Extramural Activities (DEA)

As the COVID-19 pandemic continues, the global research community is urgently working to address the virus’ impact on public health, the economy, and our society. Coordinating efforts across all aspects of science are vital to the success of our fight against this infectious disease. One clear example is the mountain of data that must be streamlined, harmonized, and organized to be shared most effectively.

To this end, NIA staff are collaborating on this important effort. Since the pandemic began, NIH-supported researchers have developed and fielded new surveys to assess a multitude of COVID-19 data points. NIA’s Division of Behavioral and Social Research staff began working in late March with NIH Office of Behavioral and Social Sciences Research and other NIH colleagues to coordinate and catalogue the large number of pandemic-specific questionnaires, modules, and scales about COVID-19 experiences and impacts, and to discourage the development of one-off survey instruments.

Resources to check before re-creating the wheel

There are now nearly 70 different instruments publicly available on two websites organized by main topics such as community impact; diagnosis, treatment, and recovery; perceptions; mental health; personal and family impacts; and risk reduction behaviors. If you’re doing COVID-19 research, check out these resources:

  • The NIH Public Health Emergency and Disaster Research Response (DR2), hosted by the National Library of Medicine and the National Institute of Environmental Health Sciences, provides a wide array of data collection tools and resources that have been used during other public health emergencies and disasters. In addition to its rich repository of public health crises-related tools, DR2 now has COVID-19-specific surveys available.
  • The PhenX Toolkit, funded by the National Human Genome Research Institute with contributions from other NIH Institutes, Centers, and Offices (ICOs), hosts many well-established measurement protocols suitable for use in pandemic studies, including COVID-19-related modules and tools.

NIH recently published a related Notice of Special Interest for COVID-19 data harmonization and sharing to encourage the use of these resources. These approaches will strengthen our ability to conduct comparisons across samples and help the field rapidly assess the impact of the pandemic across different population subgroups.

Make sure you browse these resources before developing something new! Investigators who want to share their already-developed tools should use the online intake form to submit an instrument for consideration for both DR2 and PhenX Toolkit. Please send any questions to

COVID-19 can magnify existing health disparities

We at NIH are conscious of and concerned about how this pandemic is magnifying existing health disparities. A coalition of NIH ICOs also recently released two opportunities for new research on community and digital health interventions related to COVID-19 to address or ameliorate the adverse psychosocial, behavioral, socioeconomic, and health consequences of the pandemic among health disparities and vulnerable population subgroups. We also remind you to check out the Rapid Diagnostic Accelerator for Underrepresented Populations (RADxUP) funding opportunity announcements, co-led by NIA with several NIH partners, to address COVID-19 testing in underserved populations.

NIA Director Dr. Richard J. Hodes joined several colleagues for a recent National Library of Medicine blog detailing how NIH is collaborating with many other government organizations and agencies on a full spectrum of RADxUP efforts and opportunities to speed technological innovations for COVID-19 testing. The goal is to make testing available to all Americans, especially those most vulnerable to and disproportionately affected by the virus.

Keep up the good work!

If you’re working to fight the pandemic, we thank you and hope you make these resources a part of your collaborative toolkit. We welcome your questions or comments below on how to best share your ideas with colleagues.

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