Not all research is useful. Sometimes it duplicates what has already been done. Sometimes the patients studied are too small a group – a study of 100 people might not generate enough data for people to believe the results. But ten studies of 100 people – that’s much better!
But only if the data from all the trials can be combined – and this can only happen if all the researchers agree to record the same things in the same way, whether the study is in Norway or the UK or the USA.
Trial and studies trying to find out the best treatment for Lyme disease give people treatment and record the “outcome”. They ask – do you still have pain and fatigue? Some might ask about numbness and itching. Some might ask whether you have depression. Have you managed to get back to work? Did you have neck ache as well as headache? Did anyone ask you about your brain fog or your insomnia? How long did it take you to recover? Were you able to say whether you got back to normal health?
We are funding a major research project with an international committee, to determine a Core Outcome Set that can be used in all trials, wherever they take place.
Soon we shall be asking you to contribute to a survey concerning this – what do you think should be recorded in every study? If you’d like to find out more, see what the survey might involve and register your interest, visit the Lyme COS project website.