The Board of Member States [BoMs] have begun to nominate Affiliated Centres to networks in countries where there is currently no existing HCP. This is a contentious issue amongst the BoMs, ERN’s and the EC with regards to the development of these members, however, all affiliated members will be appointed and have full access to ERN RITA’s network but will not have any voting rights. At present ERN RITA has received one nomination of Pauls Stradins Clinical University Hospital by the Ministry of Health of the Republic of Latvia. The designation for affiliated centers is appointed by the Member States directly who will then inform the EC and the networks. Do visit the ERN RITA website for further information.
The date for the call for new members is still unclear. The ERN RITA Executive Board have been reviewing the ERN RITA specific criteria for centres alongside the list of diseases and mapping document identifying the gaps within the network. This working document is stored on the ECP.
The European Commission would like to see encouragement of applications from Member States not already represented and is not keen to have an excess of HCP’s from those countries already represented within the network, although ERN RITA would be aiming to fill the gaps of expertise of the ERN RITA themes. In addition, it is important that future members are committed to the activities of the network and are able to participate in working groups and attend network meetings.
Continuous Monitoring and Assessment
Two of the ERN RITA centres were assessed this year, St Bart’s (Behçet's UK) in London participated in an onsite assessment by ASCA and Munster was assessed online through the assessment portal. Both assessments were successful and we are still awaiting the final report. This will be an ongoing annual process and the number of HCPs assessed will increase as the number of members to the network increases.
The first phase of a new monitoring and evaluation system for all ERNs has been developed by the ERN Continuous Monitoring WG and will start to be operational as of Year 3 (March 2019). As you may already know the first phase of the ERN monitoring system (18 ERN indicators) system prepared by the working group was approved by the ERN Board in September 2018 and presented in the 4th ERN Conference in Brussels. There are 18 indicators that have been agreed to be evaluated, further details can be found here:
An IT system has been developed to support and collect the information related with the 18 indicators. The collection of data will be organised in a two-step approach. From January to the end of February 2019: ERNs are asked to collect the data corresponding to years 2017 and 2018. From April 2019 ERNs will start to collect the information corresponding to the 1Q of 2019. Information should be collected at least every 3 months although it would be possible to upload the information monthly.