The advantages of having access to data insights when conducting large scale citizen science 'direct to public' research projects
DecodeME is a research project that aims to find the genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS). Participants are able to take part from the comfort of their home without having to first visit a clinic. Registration opened in September 2022. Since then, we have had over 25,000 people register to take part in this research, with over 6000 registering on the first day alone. Data workflows and automation are critical when operating at such scale. Decision making and progress are best underpinned by data driven insights from the live source data.
The talk discusses and demonstrates how we achieved this within our project.
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