By Sadie Whittaker, Chief Scientific Officer, Solve M.E.
Many Covid-19 patients experience debilitating symptoms for months after the acute phase of the disease. Researchers worldwide have been collecting much-needed patient data on Long Covid. We are among them–we opened our patient registry, called You + ME, to those with Long COVID in December. Our enrollment of Long Covid patients currently stands at over 700 individuals and our goal is to collect longitudinal data to understand susceptibility or resilience to Long Covid.
When we designed the data fields included in the registry, we evaluated how others studying Long Covid were collecting data and what questions they were asking. We then harmonized our data collection accordingly. We did this to allow for the possibility that our data could be shared with others who are also studying Long Covid. By sharing what we each learn, and by setting up data collection approaches that are similar and a set of core data fields that are alike, we can combine data to form a much larger, more informative dataset. This could be a tremendous resource that would be exponentially more valuable than any one dataset alone.
Big Data has transformed our understanding of many complex conditions and can help yield otherwise elusive insights into Long Covid that allow researchers to develop better therapies more quickly. It is encouraging to see ongoing private, academic and citizen-driven research but we lack a systematic approach to collecting longitudinal data at a large enough scale to apply the potential of Big Data to Long Covid.
During a Long Covid forum at the end of 2020, only 45 projects focused on long-term impacts of the disease were reported to be underway worldwide and a number of them were with small or narrowly-defined study cohorts. It’s critical to patients around the world that we go beyond the potential of any single study, harmonize our data collection processes, pool our knowledge, and apply the power of Big Data to Long Covid.
You can learn more at youandmeregistry.com or longcovidalliance.org. We hope you can join our upcoming webinars on Long Covid research. Details will be shared on LinkedIn, Twitter, Facebook and Instagram.