The 2024 Global aHUS Poll was closed to further responses on 18th July. It had been open for 6 weeks and every effort was made to reach out to the Global aHUS community.
Since then the job of collating the responses from the 11 language versions of the Poll questionnaire used has been taking some time to do.
There were 320 participants in the 2024 Poll. That is nearly 100 more responses than the aHUS alliance has ever had to previous surveys. So the data this Poll provides will be meaningful for a very rare disease such as aHUS.
Also there were responses from at least one of the aHUS community in 30 countries, another record.
Just over 50% of responses were from aHUS patients themselves, and the remainder by parents and other relations.
The proportion of women and men is 70: 30 so not too far adrift from the roughly 2 to 1 ratio that is usually found in aHUS research cohorts. So pretty representative.
It has been remarkable response from the Global aHUS community. There are few ,if any, aHUS research studies which would be higher in terms of respondents and geographical participation.
The job now is to go through each question and compare the results in percentage terms with the 2014 results from 217 participants from 17 countries.
This will take some time to do as well as produce tables and graphs.
And then report writing can be begin. Followed by the publishing process. .
Just from seeing the raw data it is clear that there will be valuable insights to come out of the project but that is jumping ahead.
Those participating in this Poll have shown the power of working together. Collectively giving around 100 hours of their time to help build more knowledge and awareness of aHUS
The 2024 aHUS community will have built on the work of the aHUS communities of the past.
aHUS awareness day is on 24 September.
Article No. 684
