Registry Working Party

ESID Registry - Newsletter November 2020

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by Mikko Seppänen

ESID Registry Working Group, its Steering Group and Registry Team want cordially thank all those who have taken part in ESID Registry publications or have launched new studies recently. We encourage all members to assess, what else could be studied feasibly with our invaluable registry?

We presently have almost 30 000 registry patients, of whom 28 500 have been verified. By now, we only have seven countries left, who still are in the process of getting IRB-approved, GDPR compliant Patient’s Informed Consent forms (PIC). There are only 8 out of 31 member countries with missing IRB approved, GDPR compliant Supplements to Data Protection to inform those registered patients of GDPR, who otherwise do not visit clinic regularly (either due to Covid-19 or having switched their point of care). For those of you who have already finalized this process, huge and warmest thanks from us (and your hospitals). We do realize that in the throes of Covid-19, this has not been easy!

Please note, that the respective option to document these new PICs in the registry will be activated upon approval by a competent IRB, EC, or Data protection official. Please send a copy of that approval along with the approved document to: .

However, we still miss a GDPR compliant PIC or sent Supplement to Data Protection in 76% of our verified registry patients. We urgently ask you to act and either acquire IRB-approved PIC (from the patient) or send the approved Supplement. Those already available can be found from the ESID Registry Working Party webpages ( .

Stay well and stay safe!