{"id":655,"date":"2021-04-29T20:35:44","date_gmt":"2021-04-29T20:35:44","guid":{"rendered":"https:\/\/longcovidalliance.org\/?p=655"},"modified":"2023-05-11T15:46:44","modified_gmt":"2023-05-11T15:46:44","slug":"join-the-global-long-covid-data-consortium","status":"publish","type":"post","link":"https:\/\/longcovidalliance.org\/join-the-global-long-covid-data-consortium\/","title":{"rendered":"Join the Global Long COVID Data Consortium"},"content":{"rendered":"\n
Emerging evidence has made it clear that, for some, COVID-19 recovery isn\u2019t 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 \u201clong COVID\u201d.<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
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The first step in any data collaborative is data harmonization. If you are willing to share how you\u2019re collecting data with us, we can share how we\u2019re doing it, and together we can work towards harmonization of a core set of data elements.<\/p>\n\n\n\n
If you don\u2019t 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.<\/p>\n\n\n\n