The ERN Project Managers (PMs) held virtual meetings on 15 and 23 July 2020, with the kind support of the DG SANTE ERN team. Two shorter meetings were held due to the number of topics for discussion. A very supportive working culture is now firmly entrenched in the PM group, sharing information and knowledge with each other across ERNs, all aimed at supporting busy clinician experts and improving care for patients. The minutes of the meetings and presentations can be found on the ERN Collaborative Platform (ECP).
In the 15 July meeting, Renée de Ruiter (PM of ERN ERNICA and ERN BOND) presented the ERN peer review assessments of the applicant healthcare providers to ERNs following September 2019’s call. Points of discussion were single disease applications, ERN internal specific criteria, missing or incomplete information, consortium applications, and overrepresentation from some countries. Other issues discussed were: the ERN process of non-compliance for healthcare providers who do not engage in ERN activities; disease area expansion (Michelle Battye, ERN eUROGEN); and the integration of the Affiliated Partners (Diana Marinello & Sara Cannizzo, ERN ReCONNET) as all Affiliated Partners should have signed and returned their bilateral agreements by 31 August 2020.
The second meeting on 23 July was equally lively. The first topic on the agenda was the future vision for the ERNs including what is of utmost importance for grant funding for coordination and management (Michelle Battye, ERN eUROGEN). The PMs felt that a core requirement was funding for at least five full-time posts in the ERN Coordination Teams to cope with the increased workload of the enlargement of the ERNs and to effectively integrate Affiliated Partners and new members. There were many other funding requirements such as the time of the clinicians for virtual CPMS advice; the co-funding ration (to be reduced ideally); and funding for highly specialised ERN surgical fellowships (two-year training) – a request supported by the surgical ERNs.
Nicole Geverinck (ERN GENTURIS) presented the current state of knowledge across the ERNs on how to obtain CME points for ERN educational events, summarising the costs and administrative requirements in order to achieve CME. ERN eUROGEN and EuroBloodNet are in contact with accreditation bodies specialised in their area of expertise, whereas the other ERNs are trying to get accreditations by working with the European Accreditation Council for Continuing Medical Education (EACCME).
Tanja Wlodkowski (ERN ERKNet) gave an inspiring presentation about the successful ERKNet registry which now contains over 5,000 patients. Marisa Tejedor (ERN TRANSPLANT-CHILD) presented the CEF 2020 open call for ERNs with a deadline of 4 November 2020. Further collaboration was also discussed. Diana Marinello & Sara Cannizzo (ERN ReCONNET) presented the current state of play with the consortium developing Guidelines and Clinical Decisions Support Tools (CDSTs). The meeting ended with a smile with a quick look at Michelle’s puppies (5-month-old Bulldachs called Frankie and Milo).
All agreed a third meeting would be helpful after the assessment of new members is completed and before the deadline for the CEF grant.