Since the COVID-19 pandemic began, researchers with existing longitudinal cohorts and survey samples have been developing and fielding new survey items assessing various COVID-19 specific domains such as symptoms, knowledge and attitudes, adherence to various mitigation behaviors, social impacts, and economic impacts. Efforts to standardize or harmonize COVID-19 survey items, however, did not appear feasible given the urgency to field items as early as possible during the pandemic.
To minimize the proliferation of one-off survey items, encourage comparisons across samples, and facilitate data integration and collaboration, a trans-NIH working group co-led by the National Institute on Aging (NIA) and the Office of Behavioral and Social Sciences Research (OBSSR) worked to make existing COVID-19 survey items and investigator contact information available in a survey item repository. Two NIH-supported survey item platforms have made this expanding list of survey items available as a resource for researchers interested in assessing COVID-19 specific domains.
- NIH Public Health Emergency and Disaster Research Response (DR2): The National Institute of Environmental Health Sciences (NIEHS) and the National Library of Medicine (NLM) host the DR2 site which now includes a list of COVID-19 surveys and the domains assessed in the surveys. In addition to this COVID-19 list, DR2 provides a wide array of data collection tools and resources used in other public health emergencies and disasters, providing researchers with a rich repository of survey and other measurement tools that are applicable to the COVID-19 pandemic.
- PhenX Toolkit: The PhenX Toolkit now includes a list of COVID-19 related measurement protocols drawn from the surveys listed in DR2. These COVID-19 survey protocols have not been vetted as per the PhenX consensus process but are made available for other researchers to consider, and to test as needed, before incorporating in their research studies. The PhenX Toolkit, funded by the National Human Genome Research Institute (NHGRI) and other NIH Institutes and Centers (see list here), has a large collection of well-established and vetted measurement protocols suitable to incorporate into studies involving COVID-19.
Researchers addressing COVID-19 questions, whether population-based or for clinical research, are encouraged to consider these COVID-19 specific survey item repositories and select existing survey items or protocol modules currently being fielded. Researchers with additional survey items about to be fielded are encouraged to make them public for other researchers to consider by submitting the survey to NIHCOVID19Measures@nih.gov.