Emerging evidence has made it clear that, for some, COVID-19 recovery isn’t like flipping an off switch. Thousands of people are still unwell and suffering from wide-ranging symptoms, even 100+ days post-infection. There is a clear and urgent imperative to gather data that will help us understand “long COVID”.
The You + ME Registry and Biobank is a collection of patient-reported data and biological samples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long COVID, and control volunteers.
We want to work together with others who are collecting data from those who are experiencing long-term effects of COVID-19 to create the largest possible data set.
With Big Data we will be able to uncover:
- Resilience or susceptibility to long-term effects
- Symptom clusters most commonly experienced and how these vary by patient characteristics, region, or when COVID-19 was contracted
- Similarities and differences between long COVID and other post-viral illnesses
- Possible treatments
The first step in any data collaborative is data harmonization. If you are willing to share how you’re collecting data with us, we can share how we’re doing it, and together we can work towards harmonization of a core set of data elements.
If you don’t currently have a digital infrastructure to collect data, use ours! Our registry and biobank includes a web portal and symptom tracking app specific to long COVID data collection. We can tailor this digital infrastructure to meet your needs.
If you aren’t currently collecting longitudinal data on those with long COVID, we would love a referral to You + ME. You can direct individuals to youandmeregistry.com or contact us for a social media toolkit.