COVID-19 Research Collections

In August 2020, PhenX received funding from the Office of Behavioral and Social Sciences Research (OBSSR), National Human Genome Research Institute (NHGRI), the National Institute on Drug Abuse (NIDA), and the National Institute on Minority Health and Health Disparities (NIMHD) and the National Cancer Institute (NCI) to establish recommended collections of measurement protocols for COVID-19 research. As a result of this project, seven Specialty Collections of protocols were released in the PhenX Toolkit:

  • Behaviors and Risks
  • History, Treatment and Outcome
  • Information Resources
  • Psychosocial and Mental Health
  • Demographics, Ethnicity and Race
  • Socioeconomic
  • Long COVID

The COVID-19 Specialty Collections were added to the Toolkit in October 2020. These protocols are intended to promote consistent data collection across multiple sites and studies. The first six COVID-19 Collections were established, in part, using the results of crowdsourcing, and were approved by the PhenX Steering Committee (SC). Later, based on new information, the PhenX SC recommended establishing a Long COVID Specialty Collection. Protocols already in the PhenX COVID-19 library, that addressed Long-COVID, were considered by the SC and approved in February 2023. A Long-COVID collection was added to the PhenX Toolkit in March 2023. Further details of the PhenX COVID-19 Research Project can be found here.

Specialty Collections

Each of the Specialty Collections is anchored with new COVID-19 measurement protocols. The rest of the protocols in the collection are from the current contents of the PhenX Toolkit. The Behaviors and Risks Specialty Collection focuses on activities that could impact COVID-19 infection and outcomes. The History, Treatment and Outcome Specialty Collections contains measures recording health history, health care access and treatment, including vaccinations. The Information Resources Specialty Collection records participant media usage and sources for information. The Demographics, Ethnicity and Race Specialty Collection identifies subject characteristics and discrimination due to race. The Socioeconomic Specialty Collection reviews income, employment, social support and how these may have been impacted due to the COVID-19 pandemic. The Long COVID Specialty Collection includes protocols to assess symptoms post-COVID recovery and impacts on quality of life. The goal of these collections is to help investigators better understand:

  • the symptoms and treatments of COVID-19 in the context of social determinants of health,
  • the impact of the COVID-19 pandemic on mental health and behavior, and
  • the long-term effects of COVID-19 infection on health and daily living.