Article No. 363
28 July 2020
aHUS Global Action last reported on the ERKNet Registry in January this year ( see article here).At that time the TMA patient cohort of the Registry stood at 166. That total has since risen to 215 , an increase of 49 , which is an an achievement given the impact of COVID 19 on non COVID research.
191 of the 215 are pediatric TMA patients , with just 24 adults. Although ERKNet’s Registry is becoming predominantly a pediatric Registry with a ratio of 2:1 children to adults, the TMA numbers are biased to child patients by 4:1. Clearly it is becoming a good resource for pediatric rare renal research. Less so for adult TMA patients at the moment.
Overall the rare renal adults enrolled come from three Italian hospitals. Indeed with two further hospitals in Belgium and France , the five hospitals account for more than 80% of adult participants. At this stage any adult research data is not going to be reflective of all Europe.
It is not known how many aHUS patients are among the TMA patients enrolled. Although in January ERKNet told Global Action that around 50% of the total then were aHUS patients.
There is little more to report other than ERKNet did hold its annual meeting in May. Usually the venue for the meeting would be the University of Heidelberg in Germany but this year it was held “virtually“ over internet. Attended by 220 participants , over 5 days, the meeting agenda included reviews of achievements and contributions to future plans.
Global Action is unaware of any aHUS patient advocate attending the meeting, and if there was , of any feedback to aHUS patients in Europe. This is still a deficiency in EURORDIS’ ePAG communication.
ERKNet however has provided a general summary of the meeting , including the following items of interest.
-An expansion of participating countries to 24 is expected.
-Its guidelines about rare renal diseases grows nothing specific to aHUS noted , but one about Monoclonal Gammopathy of Renal Significance is related to a rare form of complement TMA.
-There have now been 40 webinars which have had over 900 attendees in total. Two have been about aHUS which Global Action attended and then wrote about on the website ( access those articles about transplants and diagnosis
-There are now links on ERKNet’s website to over 800 journal articles about rare renal diseases , including 73 relating to TMA.
– A new Post Graduate education programme of study to become a “European Rare Kidney Disease Expert” has also been established. Such initiatives provide hope for improved diagnosis capability in the future.
-A mention was made of the patient drill down portal to find expert hospitals and clinicians in participating centres. European patients have a right to seek clinical advice from outside of their own countries and the centres in the network have signed up to providing it if sought.
ERKNet is a long term project with an increasing reach outside of Europe. Global Action will keep watching its development.
ERKNet website is at https://erknet.org/index.php?id=home
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