During December and January last, there has been a review of each of the 15 topics in the patients research agenda. Many of the topics were included in the first agenda which was created nearly 9 years ago. The most recent version has been around for over 5 years. So it was time to look at it again to see what progress has been made.
Usually a task like this would require what is known as a “literature search” . This is where published articles on the named topic are searched for on the internet. Sifted for relevance and the conclusions of each summarised to determine the current to state of play.
aHUS alliance Global Action has not got the capacity to do that so we asked an expert to summarise an answer for each of the topics. For those who have read all the articles ( all the topics below are linked to the relevant website article) it will come as no surprise that the expert we asked was none other than AI app Chat GPT. AI responses are based on searches that the “robot” undertakes.
Yes it is cheating a bit but if any viewer feels inclined to do a literature search and publish what is found they are more than welcome to do so!
Below is summary of the answers to the current agenda. It is a mixture of mainly positive answers , some negative and some qualified. The overall impression is that patients’ concerns are being addressed either by clinicians , academia, industry ( manufacturers and genetic testing labs) , and patients themselves.
So what next?
Firstly do we still need to have a research agenda and are patients already satisfied with the answers they have to empower them for managing their aHUS?
Are all aHUS researchers satisfied that they know what is important to aHUS patients?
If no then the agenda clearly needs some rationalisation and reformatting and to get as wide spread communication reach to the wider aHUS community.
So more work to be done before any decisions can be made. See Review of the aHUS patients research agenda ( Part 2)