ISSUE 22 - NOVEMBER 2021

Everything is so much slower than it should be: The new Members of ERN-LUNG have been accepted by the respective Core Networks but the Board of Member states has not confirmed their membership. What can ERN-LUNG do? We do treat them all as members, because it does not actually make much of a difference whether Members or members (travel expenses can only be reimbursed for M, not m, but, ERN-LUNG will check if there are some other resources we might use in case this would be necessary). Another example is the next call for the second funding period of ERN-LUNG. It seems not to be questioned that ERN-LUNG will be funded, but, for the time being we do not have any certainty of how much we will get and when. Even though there is some hope for gap funding and for a second five year grant, we are still waiting to be able to move our team to the new Coordinator’s site and/or prolong the contracts for our staff of the Network Coordination Team. What can ERN-LUNG do? We hire a new staff member at the new site, i.e Elisabeth in Paris, optimistically hoping that the money will come in time. If not, we will have to find a solution.

These two examples show that we need to keep our optimism and the belief that we will succeed. Eventually, we will successfully move into the next funding period and ERN-LUNG will continue to grow and improve its services to patients with rare diseases of the respiratory system throughout Europe.

Knowledge sharing and stimulating collaboration between health care professionals in European Reference Networks (ERN). That is the aim of the Exchange Programme 2020-2022, funded by the European Commission. In the coming two years, three different rounds of exchanges will take place between professionals of Health Care Providers that are member of an ERN. The first round of visits was planned to start in March 2021.
The objective of the ERN Exchange Programme is to palliate disparities in specific knowledge or gaps in expertise by facilitating the arrival of high-level expertise in a considerable number of diseases to a big number of Healthcare Providers. The contractor will provide services to all European Reference Networks in the framework of the Exchange Programme of the European Commission.

Please see FLYER or look into the ERN Newsletter (Issue July 2021) for more information on the Exchange Programme.

Isabelle Fajac, ERN-LUNG´s lead of the FC Research and Clinical Trials Network has announced that she will be stepping back from her position as Functional Committee lead and we will have to identify a suitable successor to replace her. This decision will be made in the framework of our next Annual Board Meeting, which is coming up in the spring of 2022. The exact date of the meeting will be announced as soon as we have set a date which is suitable to most of the members.

The New Call 2019 that has been launched in autumn 2019 by the European Commission, resulted in 37 eligible applications from 17 European countries. The ERN-LUNG validation has been completed and resulted in 32 favourable evaluated HCPs. Depending on the final completion of the call in September 2021 ERN-LUNG is very optimistic to have these favourable evaluated HCPs approved to let them join the current Network from the beginning of October 2021.

The main objective of this workshop has been to demonstrate the benefits of adopting the Advisory Committee for Therapeutics (ACT) model in rare disease communities, orientated around the European Reference Network groupings (and sub–domains) and to communicate best practices in this respect from the neuromuscular field. Participants were given dedicated space and time to discuss and explore the feasibility of creating an ACT within their own disease domain and/or between disease domains.

Kors van der Ent, lead of ERN-LUNG´s CF Core Network, has participated in this workshop in August. He reported that the team presented the construct and the practicalities of the Advisory Committee for Therapeutics as established for rare neurologic diseases by the Newcastle University. It was really helpful to see how the Committee works and how they have been successful in joining experts from all over the field to give advice on upcoming or ongoing drug studies. It can serve as an example for many other rare disease areas. During the second day he has demonstrated how the Clinical Trial Network for Cystic Fibrosis (mostly members of ERN-LUNG) works. There is broad overlap between both initiatives, with strong assets for both models. The ACT has more and structured input from legal and regulatory entities (like EMA and FDA) while the CF-CTN has a broader and more diverse network with more structured funding. So, overall it was quite interesting to get insight in the ACT and he thinks it can be helpful for subnetworks in ERN-LUNG.

A “Patient Journey” is a patient testimony that reflects the clinical pathway and needs of patients for a specific disease, showing in a comprehensive way the goals that are recognized by both patients and clinical experts.

Up to now, 4 disease specific patient journeys have been developed and are available on the ERN-LUNG website, and recently we have received a further patient journey from the Core Network Alpha1-Antitrypsin Deficiency (AATD). So we are very happy that we are making progress in this project as well. We will place it on our website as soon as possible.

The PopReg has been up and running for quite some time, now, meanwhile, we have mor than 80 patients registered. In order to encourage the voluntary registration of more patients, it was suggested by ERN-LUNG patient representatives that we further promote the existence of this project by creating a flyer to be distributed to all networks for promotional purposes, as well as by creating a webinar to better inform the patients who want to get enrolled in the Population Registry. Another step in this project will be to make PopReg available in all EU languages. This will make it possible to reach a wider audience. Currently, the platform is available in German and English and we are working on translations in French as well as Italian. In case you wish to contribute to this project and can help us with the translation in other EU languages, please feel free to contact the Network Coordination Team. We are happy to receive your support! The ERN-LUNG Population REGISTRY is available at: http://popreg.ern-lung.eu/

We have won the grant for funding within the CEF funding scheme ‘ERN-LUNG eIntegrate’ to succeed the ERN-LUNG eSupport, which we had applied for. This will provide resources for the continuance of our IT-Helpdesk as well as to start implementing the ‘ERN-LUNG Academy’, ERN-LUNG is currently in the process of setting up of a postgraduate educational program in rare diseases of the respiratory system. The aim is to provide a three-year postgraduate training program (PTP) that results in the achievement of a ERN-LUNG certificate stating partcipation in the CME in rare diseases of the respiratory system. The combined training program will consist of eLearning and eTeaching modules, as well as case studies and up to three short cross-border training visits of five days each. For the implementation of this PTP and the development of the content of the eModules and eCases, ERN-LUNG has applied within the CEF funding scheme for financial support. Meanwhile, after having started a collaboration with the ERS by selecting pre-existing content and by using the eLearning platform of the ERS and, knowing there are good chances of receiving funding from the EU for cross-border visits, we can now move on and develop our own content for a comprehensive programme. To discuss further details of this project, we have scheduled a meeting with the ERS and will be happy to keep you posted on the project developments. 

The last CPMS panel discussion has taken place on October 20. For some time now we have made it a habit to host a monthly CPMS panel discussion and invite as many members as possible to join. Unfortunately, there has been little response to date, and we hope that this will change in the future, so we invite you to the next panel discussion on 24 November, 2021. More information can be found on our website.

The European Commission (EC) has not launched a call for ERN funding applications which means there will be not enough time for regular evaluation and negotiations to have new grants in time before the first five years of funding will be over (March 1, 2022). The EC, therefore has communicated that there will some kind of funding for the gap between years 1 to 5 and any new grant. So far, we do not have any binding committment from the EC to fund our staff and other obligations. Thomas is optimistic though that there will be some kind of promise coming from the EC, hopefully early enough that we can keep our NCT staff from leaving ERN-LUNG. For the gap period we will continue to manage the network coordination from Frankfurt, and move the main tasks to Marc Humbert and his group in Paris for the new grant – hopefully not later than spring 2023. All signals coming from the EC sound like the funding might change from a 60% to 100% funding scheme, that ERN-LUNG has always argued in favor of.

DG Sante has created a vision paper called "The New CPMS" and sent it to the ERNs to which we have been invited to comment on, in order to be incorporated in the procurement which was launched in August/September. The aims of the new CPMS are a simpler and more intuitive desktop interface, paired with the new mobile interface to help accomplish certain tasks, which shall  increase the commitment of the networks and their members to use the system. Furthermore, it is expected that the new business model will facilitate future customizations of the platform to better suit specific needs and will contribute to an increased involvement of Member States towards the integration of the networks into their national healthcare systems.

In the framework of our last Medical Steering Committee (MSC) Meeting, which took place in September, we discussed whether it seems realistic to have a face-to-face (f2f) meeting for the next Board Meeting, to be organized in February 2022. Most wishing a f2f but many members of the MSC are sceptical. We will look for a date (survey to follow) and then will decide according to the pandemic development.

ERN-LUNG and some of the CF Core Network members (Italy, France, Lithuania, Germany) together with their respective Patient organizations as well as CF Europe have submitted a grant application for a citizen science project and have made it into the second round of evaluation. No decision has been communicated so far.

-       Core Network meeting, June 30

-       Functional Committee meeting, July 7

-       ePAG meeting, August 30 

-       Medical Steering Committee meeting, September 22

-       Internal Coordinators Group meeting: October 6

-       CPMS workshop on data migration (Wrap-up), September 27

-       ERICA (General Assembly and various WP specific meetings)

-       ERN Monitoring webinar, September 15

-       AMEQUIS 2^nd Stakeholder Conference, 26 & 27 October

-       CPMS Panel Dicussion, November 24, 15:00 CET

-       ERN Coordinators Group Meeting, November 12

-       Annual Board Meeting (ABM), February/March 2022, exact date to be anounced

·         Please let us know if you are participating in any conference where you will be presenting ERN activities and/or results

·         Please let us know if you have published anything recently (2021) so that it can be highlighted on the ERN-LUNG website (this will also help facilitate the biannual ERN Monitoring Data Collection process)

Take a look at the latest EU Funding Calls here: