Update: aHUS Diagnosis Process Study

Article No. 421

1 March 2021

There is no doubt that with the response by the aHUS Patient community to the call for help that the aHUS Diagnosis Study Project is going to be immense.

The successful call to action does mean however  that there will be a lot more work to do on the wealth of data that has been collected.

For the past month aHUS Global Action volunteers have been producing a host of spreadsheets from the master copy of results. An analysis base has been established. From each of the spreadsheets basic tables have been created.These tables display, in numbers and percentages, what respondents have told us.

Once these are completed, work will then begin on finding similarities and explanations of any  differences observed by delving further into the statistics and establishing correlations. That is going to take time to do. It must be done systematically and accurately.

Once it is done  then that the important conclusions can be drawn and the report about them can begin. The methods, results and the final tables can be written up and presented.

Aside from the quantitative analysis there is much qualitative evidence in the comments made by respondents to be looked at.

So some way to go yet!

But from first viewings of data  this research is going to be very insightful. First and foremost it will be  based on a wide range of patients’ and families‘ real life experiences from all around the world. Much wider scope than any registry.

Without going into the detail at this point, the collective characteristics of our aHUS  community in terms of age, gender and family history are very representative. They closely matches that of other large aHUS patient cohorts studied in the past.

That is powerful.

It adds considerably to the credibility of this aHUS group’s patient voice.

Ultimately all aHUS research just describes what happens to an individual aHUS patient. Within and without them.

The aHUS patient community can give the best of patient reported outcome experiences and insights.

It can provide authentic awareness.