Last Summer nearly three hundred aHUS people from around the world participated in the 2024 Global Poll.
They filled in a questionnaire based on questions asked in a Global Poll held in 2014.
The 2024 questionnaire was translated into 11 languages to make it as inclusive as possible.
It took some time to collate and translate the different language results into a master copy of raw data and then to check it for completeness.
Having done that the master data spreadsheet has been analysed. That took some time as the 2014 results had to be similarly presented for comparison.
By Christmas the statistics were available to graph the results and compare them.
Work then began of producing 28 statistical Tables with column graphical presentations.
Along with shaping the presentation of those tables into an acceptable and consistent format , conclusions were being observed and discussion topics identified.
The “Results” tables are now complete, the “Discussion” can begin to be written.
A project like this takes time to do. Some aHUS research articles take three years or more to do. They are “fitted in” around other work!
This is the biggest ever research project for the aHUS alliance Global Action and the first to compare the disease using two snapshoots of living with aHUS as a rare disease 10 years apart- probably unique for a rare disease.
What has progressed? What has stayed the same? What is new?
The answers are worthy of a formally published research article and that is the intention when the article is fully drafted.
A huge thank you to all participants for making this possible and for their patience while the project is being concluded.
Article No. 727
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