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EUROPEAN REFERENCE NETWORK ON RARE RESPIRATORY DISEASES [ERN-LUNG] [769039] - Operating Grant
Project abstract

ERN-LUNG is a network of European patients and healthcare providers dedicated to ensuring and promoting excellence in care and research to the benefit of patients affected by rare respiratory diseases. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a European Reference Network (ERN), a non-profit, international, professional, patient centred network.
ERN-LUNG is focused on rare respiratory diseases and is made up of nine core networks representing the diversity of diseases and conditions affecting the lungs. The current core networks (sub-thematic areas) are interstitial lung diseases, cystic fibrosis, pulmonary hypertension, primary ciliary dyskinesia, non-CF bronchiectasis, alpha1-antitrypsin deficiency,
mesothelioma, chronic lung allograft dysfunction, and other rare lung diseases (e.g. respiratory malformations, Ondine syndrome). In addition to the sub-thematic groups, ERN-LUNG is also organized in functional committees tackling horizontal topics, affecting all of the current and future core networks of ERN-LUNG. These functional committees are Research and Clinical Trials, Ethical Issues, Registries and Biobanks, Patient Recorded Outcomes and Quality of Life, Quality Management, Guidelines and Best Practice of Care, Communication and Outreach, Cross Border Care, and Professional Training and Continued Medical Education.
In building up on and learning from mature networks of recognized international excellence, ERN-LUNG will add value for patients, healthcare providers, and professionals through dissemination of knowledge, enhancement of general expertise by learning from the best centres in rare respiratory diseases in Europe, and improvement of standards of care, quality of life and prognosis for the whole spectrum of rare pulmonary diseases.

Summary of context, overal objectives, strategic, relevance and contribution of the action

ERN-LUNG is a European Reference Network for rare diseases of the respiratory system, a non-profit, international, professional, patient-centric and scientific Network. ERN-LUNG is committed Europe-wide and globally to the prevention, diagnosis, and treatment of rare respiratory diseases through patient care and advocacy, education, and research. In keeping with these goals, ERN-LUNG interacts with both national and international organizations, which have similar goals.
Mission
ERN-LUNG is a Network of European Healthcare Providers dedicated to ensuring and promoting excellence in care and research to the benefit of patients affected by rare respiratory diseases.
Vision
ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages.
Scope
ERN-LUNG is a Network of 60 centres from 12 countries, focused on rare respiratory diseases which is made up of 9 Core Networks representing the diversity of diseases and conditions affecting the lungs. The current Core Networks (sub-thematic areas) are:
• Interstitial lung diseases (24 members from 8 Member States)
• Cystic fibrosis (24 members from 10 Member States)
• Pulmonary hypertension (17 members from 10 Member States)
• Primary ciliary dyskinesia (10 members from 6 Member States)
• Non-CF bronchiectasis (9 members from 4 Member States)
• Alpha1-antitrtypsin deficiency (3 members from 3 Member States)
• Mesothelioma (3 members from 3 Member States)
• Chronic lung allograft dysfunction (3 members from 3 Member States)
• Other rare lung diseases (e.g. respiratory malformations, Ondine syndrome) (2 members from 2 Member States)

Most of the diseases represented within ERN-LUNG are complex by nature of the underlying genetic mechanism or by causing secondary changes and damage to other organ systems indirectly. Early diagnosis is associated with better prognosis and yet knowing of a deadly genetic disorder from early childhood, it is extremely demanding on patients, parents and care team members, and therefore calls for psycho-social support. This is why multidisciplinary teams are extremely important in providing quality care to patients within ERN-LUNG.
In addition to the sub-thematic groups, ERN-LUNG is also organized in Functional Committees whose aims are to tackle horizontal topics, affecting all of the current and future
Core Networks of ERN-LUNG and thus ensuring extensive crosstalk between all members of ERN-LUNG irrespective of their being located in a specific Core Network. These Functional Committees are:

• Research and Clinical Trials
• Ethical Issues
• Registries and Biobanks
• Patient Recorded Outcomes and Quality of Life
• Quality Management
• Guidelines and Best Practice of Care
• Communication and Outreach
• Cross Border Care
• Professional Training and Continued Medical Education

The Network’s current set-up will evolve with the inclusion of more members and partners after it is formally established. The creation of a 9th Core Network on other rare lung diseases is intended to serve as an intermediary solution to the formal creation of additional Core Networks in the next five years covering groups that could not formally become a Core Network in the initial application stage.
Moreover, ERN-LUNG looks forward to working closely with Member States where no Healthcare Providers are present in order to involve affiliated partners and ensure collaboration, information exchange, research and any other activities undertaken within ERN-LUNG encompasses centres beyond its established full membership.

Methods and means

ERN-LUNG is a big Network, made up of 60 participants. Decision-making processes cannot be based on unanimity, at the risk of freezing or limiting the Network’s room for action. However, the Network is committed to ensuring a consensual approach to the definition of its strategy and implementation of its work programme. During the elaboration of the Network, a survey was developed and disseminated to centres interested in participating in the ERN-LUNG and to patients through patient groups identified by the Network candidates. The aim of the survey was to define the objectives and services of ERN-LUNG. Over 30 healthcare providers and 60 patients participated in this survey. ERN-LUNG will ensure such an initiative is replicated at a greater scale when making decisions affecting the Networks activities in order to reach a consensus between HCPs, patients and partners. To reach consensus, and depending on the topic at hand, the Network Coordination Team will organise consensus meetings and consultations. For consensus meetings, the Network will follow a similar approach to the one implemented within the European Cystic Fibrosis Society:
• Any Network member can propose a consensus meeting, upon approval from the ERN-LUNG Board
• Proposal shall contain the following information: aims and objectives of the meeting, proposed dates, list of suggested participants
• If the consensus meeting is approved, the member who proposed it will be in charge of developing a draft consensus document which will be discussed, reviewed and approved at the consensus meeting
For consultations, the Network will proceed either through online surveys for more straightforward topics and ensure dissemination through its members, Patient Board and affiliated partners. For more qualitative discussions, a consultation following the Delphi model will be set up. The proposal shall contain a multiannual plan of implementation of ERN's internal and external activities related to the specified goals and objectives. The multiannual plan must include a timeline, specify main milestones, as well as main outputs and deliverables envisaged. The deliverables shall be timed, linked to the goals, objectives and activities and aimed at the EU 3rd Health Programme priorities. This methodology will be applied consistently across Work Packages.
In order to make this vision a reality, the 5-year plan of ERN-LUNG aims at fulfilling the following objectives:
- OBJECTIVE 1: By the end of the first year of establishment of ERN-LUNG, taking stock of what exists at European level in the area of rare respiratory diseases to assess gaps and identify solutions (clinical trials networks, research activities, educational needs of HCPs and patients, diagnostic and services available, etc.) in order to develop multi-annual plans for the network and its Core Networks, with support from Functional Committees, the Patient and Advisory Boards
- OBJECTIVE 2: Improving cross-border collaborations for improved continuity of care for patients and providing highly specialised patient-centred care in rare respiratory diseases by setting up an online expert advice system facilitating exchange of information, in particular second opinions on complex cases, to the benefit of patients and HCPs (including beyond the members of ERN-LUNG)
- OBJECTIVE 3: Reinforcing research in diseases covered within ERN-LUNG, epidemiological surveillance like registries and provide training for healthcare professionals. Ensure that by 2021, registries are set up and running for all Core Networks of ERN-LUNG and that ERN-LUNG has successfully applied for funding and coordinated a research project (e.g. within Horizon 2020 framework) of critical value for the network as a whole
- OBJECTIVE 4: Ensuring access to quality and accurate information on rare respiratory diseases by developing online and offline resources about diseases covered within ERN-LUNG. By 2021, there should regularly updated specific pages on dis

Work performed during the reporting period

ERN-LUNG’s Year 1 programme was set up to establish the ERN’s structure by setting up internal coordination processes, developing detailed plans for the next five years, whilst starting with the implementation of some of the aspects of its Work Packages. Year 1 has been dedicated to creating ways of working within and outside the Network to achieve its overall objectives, identifying areas where the Network adds value to existing activities by systematically reviewing ongoing projects within its Core Networks and coordinating in the most efficient way possible the Network to ensure its long-term success and growth.
2.1.2. The ERN related key objectives for the year
The following ERN-LUNG’s operational objectives for Year 1 have been achieved and the tasks have been accomplished:
1. Set up a Network management and coordination system to ensure ERN-LUNG delivers on its long-term objective
Task 1 – Finalise the multi-annual strategic plan of ERN-LUNG and complete administrative processes for registration. This has been done with the exception of registration as e.V. (registered association according to German law, because this proved not to be feasible).
Task 2 – Establish an internal communication and coordination mechanism, i.e. a management tool has been implemented and is widely accepted (Basecamp)
Task 3 – Develop Core Network’s action plans, i.e. all Core Networks have developed action plans
Task 4 - Organization of 1 ERN-LUNG Board Meeting: one Board meeting has been held, the second Board meeting has been prepared
Task 5 – Coordination with other ERNs, i.e. regular contact with all other ERNs has been established
Task 6 – Knowledge management and IP protection, i.e. rules and SOPs have been consented,
2. Create a robust dissemination and communication plan to ensure the activities of ERN-LUNG are amplified and reach their target audiences
Task 1 - Dissemination Plan has been published
Task 2 – External communication by means of editorial of the major European Journal (RRJ) and other activities.
3. Develop a data gathering and sharing system to enable proper exchange of information, internally and externally
Task 1 -Data-gathering for update of EC IT Platform has been started although the IT platform was not operational at the beginning of the first year of ERN-LUNG.
4. Pave the way to the proper implementation of cross-border care and pathways to improve quality of care for patients across the EU
Task 1 - Guidance Document on multi-disciplinary teams has been prepared for consensus discussion during the second Board Meeting which will be held in March 2018
Task 2 - Roadmap of clinical guidelines was meant to be prepared, but the survey showed that all Core Networks had their own road maps already, i.e. no ERN-LUNG road map had to be developed, no gap to close was found.
5. Develop a training and education plan to facilitate continuous learning, and cross-sharing of expertise within the Network
Task 1 – Needs assessment has been performed for the distinct target groups and lots of possible synergies have been identified which will be utilized from year 2 of ERN-LUNG for joint activities together with ERS and ELF.
Task 2- Educational 5-year Plan has been developed
6. Identify research gaps to develop a strong research plan and prepare for future research funding applications at EU level
Task 1 -Strategic research plan has been set up after identifying the two major areas of activity: Registry and Clinical Trials Networks
Task 2 –Annual report on research projects has been prepared after a network wide survey was performed
7. Adopt a robust external and internal evaluation policy to measure ERN-LUNG’s performance against Network operational objectives
Task 1 –Evaluation mechanism has been adopted and will be used before the end of year one
Task 2 - Annual Reporting will be finalized in due time

The main output achieved so far and their potential impact and use by target group (including benefits)

The main achievements of the action so far can be summarized to be:
1. Establish close collaboration across many European Member States and across many different diseases of the respiratory system.
2. Identify areas of major interest for generating added value on the European level and across all diseases represented within ERN-LUNG
3. Get many stakeholders to collaborate across their specific needs and thus achieve true networking benefits to all members of ERN-LUNG.
4. Organize joint research activities by participating in European calls and projects
5. Involve patients in all activities of ERN-LUNG and create a patient centered Network
By combining these achievements and realizing them as achievements of a large group of different stakeholders from different countries and different target groups the network has already achieved one major aim: Being a central knowledge hub for rare diseases of the respiratory system and help to better integrate the varying competences of the different partners. The achievements will be the basis for the network to function as a whole and provide services to patients across Member states. It will be important to strengthen the Network by including members for affiliated partners in all Member States. It will be necessary though to have some financial remuneration for what the Members (HCPs) are going to deliver as cross border health care services.

Achieved outcomes compared to the expected outcomes

All planned activities have been accomplished during the first year although we had to postpone some of the planned deadlines for delivery. This has been due to the fact that we had to set up the cooperation and communication pathways and this did take somewhat longer than expected. The only two major planned activities that did not take place so far are the registration as an association, which we had to give up. ERN-LUNG has to remain an activity of the HCP where the coordinator is situated. Otherwise, the HCP could no longer stay involved and that would be contra productive. The second area where we did not achieve our planned goal is the teleconferences. We have not had a cross-border consultation by video conference, yet. This is due to the fact that we have not been able to use the IT platform for this purpose yet, but we are optimistic that ERN-LUNG will have its first and many following videoconferences during year two.
The overall rate of accomplishments o the network is very high. It is important though to mention that many HCPs have a hard time in contributing to the tasks of the Network without getting any direct or indirect financial contribution yet.

Dissemination and evaluation activities carried out so far and their major results

Evaluation results cannot be given so far.
Dissemination has been done by means of the project website (www.ern-lung.eu) and by publications. We have presented the network in several meetings and by endorsing some meetings and congresses we have further contributed to dissemination.
One highlight is the editorial by the coordinator and the vice-coordinator in the European respiratory Journal. [Humbert M, Wagner TO. Rare respiratory diseases are ready for primetime: from Rare Disease Day to the European Reference Networks. Eur Respir J. 2017 Feb 23;49(2). pii: 1700085. doi: 10.1183/13993003.00085-2017. Print 2017 Feb. PubMed
PMID: 28232421].
These activities have helped to increase the visibility of ERN-LUNG in the field of pneumology and have been the basis for the forthcoming closer collaboration between The European Respiratory Society (ERS) and ERN-LUNG. This will not only lead to a joint symposium during the next ERS Congress in Paris but also to negotiations about co-funding possibilities for the ERN-LUNG yearly budget.

Details
Start date: 01/03/2017
End date: 28/02/2018
Duration: 12 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 196 632,40