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EUROPEAN NETWORK ON RARE PRIMARY IMMUNODEFICIENCY, AUTOINFLAMMATORY AND AUTOIMMUNE DISEASES

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Dear colleagues,

This is the last newsletter issued by myself, Professor Andrew Cant, before the formal handover to Professor Nico Wulffraat and his team in Utrecht on March 1, 2019. We would like to update you on our latest news and updates, including a summary of the 4th ERN RITA Council and Board Meeting that took place in January in Amsterdam. The change of coordination was requested by the EC and following the democratic vote by the RITA HCP’s Professor Nico Wulffraat, from UMC Utrecht, will lead the network as the new coordinator. Lydia, Roz and I would also like to say thank you and goodbye to the Theme Leads and Working Group Chairs for your support and cooperation and especially to Pavla Dolezalova for her tireless efforts to get the CPMS operational. I will be retiring from clinical practice in May 2019, Lydia Tropper is moving to a new role at Graz Children’s Clinic and Roz will continue to support Newcastle as a HCP. We welcome the new ERN RITA Secretariat, Bart Uetterhaegen Project Manager and Mark Klein, Project Secretary both based at UMC Utrecht.  We congratulate Nico Wulffraat and his team and wish them the best of luck for their new task.

Professor Andrew J Cant

Summary - Year 2

The ERN RITA secretary is currently uploading the deliverables of year 2 onto the European Collaborative Platform [ECP]. The current work and milestones of our Working Groups can be seen in the minutes of the Amsterdam Meeting which have also been uploaded onto the ECP.

Year 2 has focused on the implementation and the encouragement of the active use of the CPMS platform. The EC held the 3rd ERN Conference in Brussels in November 2018. 13 ERN RITA members attended. This event was an opportunity for the EC to update all ERN’s on current and future challenges.  A summary of the conference can be found here.  https://ec.europa.eu/health/ern/latest_updates_en

Paediatric Rheumatology

As Professor Nico Wulffraat takes on the role of Network Coordinator he will leave the role as theme lead for Paediatric Rheumatology for ERN RITA. This role will need to be replaced, and nominations for this position will be welcomed. The EC commended ERN RITA on the transparent and democratic process carried out to replace the coordinator and the appointment of this new lead role will be handled in the same way.

CPMS

It is currently the number one priority of the network to ensure the Clinical Patient Management System [CPMS] becomes fully operational. We have recruited 2 new staff, Zdenek Dolezal and Marie Hrdova in Prague, with funding from the CEF Telecom bid. They are working with the ERN RITA HCP’s to troubleshoot problems, encourage registration and develop the expert groups to get complex patients through this system.  The IT Helpdesk will be rolling out a programme to visit every ERN RITA HCP to work on this system in the near future to provide further training and guidance to your team members.

 

Expansion of ERN RITA

Affiliated Members

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.

New Members

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:

https://ec.europa.eu/health/sites/health/files/ern/docs/continuous_monitoring_en.pdf

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.

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ERN RITA · UMC Utrecht · Heidelberglaan 100 · Utrecht, 3584 CX · Netherlands

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