ISSUE 32 - DECEMBER 2023

Welcome to the final edition of our ERN-LUNG newsletter for this year.

It has been a very busy year with many achievements and great activities which have been going on and we would like to thank all of ERN-LUNG´s members for the many great ideas, effort and valuable contributions to ERN-LUNG. We wish you a wonderful Christmas time with your families and hope you get the opportunity to relax and recharge your batteries during your Christmas break.

As we, the Network Coordination Team, will take a short Christmas break and switch off for now and try to refuel in order to pursue ERN-LUNG´s objectives in the upcoming year 2024.

In this newsletter we have summarized all of our past, ongoing and future activities within the ERN-LUNG coordination team, as well as collaborative work, general ERN topics and rare disease news. Last but not least, we have a summary of interesting events coming up in near future. We hope you enjoy this newsletter issue and in case you have any questions, please do not hesitate to contact the ERN-LUNG Network Coordination Team.

Once again, let us wish you a wonderful 2024.

Your ERN-LUNG Network Coordination Team

The majority of the ERN-LUNG administration is located at the Frankfurt University Hospital and this Hospital’s IT infrastructure has been brought to a sudden halt by a massive cyber-attack on October 6.

You may have heard similar news more than once - as we had before. But now that we are in the middle of such a mess, we have an unvoluntary closer view.

The IT managers of the hospital reacted immediately and disconnected the entire clinic from all internet connections. The website of the University Hospital Frankfurt has been shut down. All email addresses of the hospital (*.kgu domain) are not accessible. For our every-day work this means: no internal communication, we can’t even look up telephone numbers, nor look into accounting (how much money is left) is possible, we cannot purchase anything, we cannot pay our bills. We cannot even sign contracts nor can we report our expenditures to the EU funding agency.

The damage appears to be so massive that we will not have access to our accounting before Christmas if at all – the only good news is that the patient data have not been affected. Those responsible are already assuming that the overhaul and improved security of the IT structure will take until Easter. Since the invasion is unprecedented, they do not even know where the programs have been changed, they have to start from zero when installing a new IT-infrastructure.

What does it mean for ERN-LUNG?

First, we have tried to find work-arounds and new email addresses to make sure communication has been reestablished. Second, we have tried to inform all about the fact that at the very moment we are not able to pay bills, re-imburse any costs claimed, but we will try to be as quick as possible. We have found the European Commission and HADEA, who are in charge of the administration of our grant reporting and the grant agreement preparation for the new funding period to be very understanding and helpful, thus we do not have to fear that ERN-LUNG is at risk.

We have resumed to use pencil and paper more again, send a fax (that worked until a few days ago, when we suddenly were without telephone and fax), and walk across the campus to carry those sheets of paper from one office to the other.

This is the time of the year to wish for a peaceful holiday season. In the face of so many terrible news of war and hate we have to hear and where we cannot do much, we are aware that ours are minor problems which do not threaten our lives and wellbeing.

The Coordinator and the Network Coordination team send you all best wishes for a peaceful and safe new year 2024.

The ERN Monitoring Data Collection Exercise will start in January 2024 with a slight alteration of the data collecting process. In the previous years, the ERN-LUNG healthcare providers were asked to provide their information to the Network Coordination Team. In 2024´s data collection, the HCPs will have to submit their patient numbers directly to the European Commission via an online portal. The deadline for submission of patient numbers will be February 29. All the other indicators will be collected by the Network Coordination Team and submitted as usual to the EC. ERN-LUNG will provide further details on this new process before Christmas.

19th meeting of the ERNs Coordinators Group

The 19th meeting of the ERNs Coordinators Group was held on 23rd October 2023 in Luxembourg. Members of DG Sante met and discussed future plans with coordinators and project managers from the 24 ERNs at the meeting, which was chaired by Donata Meroni and Holm Graessner. Various work packages were covered, as well as updates on BoMS, ERN Grants, Evaluation, CPMS, ERN Registries, ERN Academy, and Ukraine activities. Rules of Procedure (RoP) working group implementation and coordinator changes, as well as voluntary withdrawals, were outlined.

ERN-LUNG welcomes new leads and deputy leads for the following Core Networks:

CLAD: Jens Gottlieb from Medizinische Hochschule Hannover, Germany, deputy: Federica Meloni, Pavia University, Italy

BRONCHIECTASIS: Eva Polverino, deputy: Sandra Rovira, both from University Hospital Vall d´Hebron, Spain,

as well as the newly established Core Network Sarcoidosis in March 2023, lead by Francesco Bonella, Universitätsklinikum Essen, Germany and his deputy leads Paolo Spagnolo, University of Padova, Italy and Jacobo Sellares, Hospital Clinic, Barcelona, Spain.

Furthermore, the ORLD Core Network, lead by Helge Hebestreit (Würzburg, Germany), welcomes his new deputy lead, Horst Olschewski, University Hospital Graz, Austria, as well as three new group members:

Ilaria Campa, Pavia University Hospital, Italy, Julien Guiot, Universite de Liege, Belgium and Peter Merkus from the Radboud University, The Netherlands.

New FC lead: Research & Clinical Trials Networks

ERN-LUNG is delighted to announce the appointment of Professor Kim Gjerum Nielsen as the new Functional Committee lead for "Research and Clinical Trials Networks."

Professor Kim G. Nielsen brings a wealth of expertise as a professor in pediatrics and Chief Consultant overseeing the Paediatric Pulmonary Service at Copenhagen University Hospital, Rigshospitalet, Denmark. His specialization includes chronic lung diseases such as CF, PCD, and ILD in children, but has also considerable experience in adult PCD. Notably, Professor Nielsen has played a pivotal role in the establishment of the PCD Clinical Trials Network (PCD CTN) in collaboration with the PCD Core Network of ERN-LUNG, where he serves as the director and coordinator.

We believe that Professor Nielsen possesses the essential qualities to guide ERN-LUNG's Functional Committee and contribute to the advancement of Research and Clinical Trials Networks. His proven success in establishing the PCD CTN reflects his dedication to fostering collaborative initiatives within ERN-LUNG. We are confident that he will effectively share his insights and ideas with other Core Networks, further promoting the concept of Clinical Trials Networks.

Professor Nielsen's role extends beyond leadership; he is committed to supporting all members of ERN-LUNG in optimizing the network's structure for trans-European research projects. We encourage everyone within ERN-LUNG to seek his assistance in establishing core-specific clinical trial networks. With Professor Kim Gjerum Nielsen taking the lead, we look forward to achieving new milestones in research collaboration and advancing our collective mission.

➔ Let us know if you are participating in any conference where you will be presenting ERN activities and results

➔ Let us know if you have published anything recently (2023) so that it can be highlighted on the ERN-LUNG website; 

Any publications, clinical trials or guidelines arising from the collaborative work of ERN-LUNG members as major contributors  (at least 2 HCPs from at least 2 Member States) linked to ERN activities, are encouraged to mention ERNs either in the acknowledgement section or in the authors’ affiliation, using e.g.  “This work is generated within the European Reference Network for Rare Respiratory Diseases (ERN-LUNG)” or “This work is supported by the ERN for Rare Respiratory Diseases and Complex Conditions (ERN-LUNG)”. If the support is not financial, “(non-financially)” can be added in brackets after the word “supported” for additional clarification. Please keep us informed of your research output so that we may publish it on our website.

• HaDEA Calls for Proposals on Health
• HaDEA Calls for Tenders on Health
• Horizon Europe calls for Funding on Health