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European Reference Network for rare respiratory diseases (ERN-LUNG) [ERN-LUNG] [843704] - Operating Grant
Management by lead UKF

Start month:1 - End month: 36

Task 1 – Improve quality and reduce quantity of communication by tailoring the Basecamp project management system to the specific needs of teams and working groups
In the first year of its establish...
Task 1 – Improve quality and reduce quantity of communication by tailoring the Basecamp project management system to the specific needs of teams and working groups
In the first year of its establishment, ERN-LUNG has gone through a number of administrative steps to establish a strong communication and exchange between members and the Network Coordination Team (NCT). We have been and will be using ‘Basecamp’, a project management tool, which is a free software for educational purposes. This is causing a large number of messages to all active members, the amount of activities (tasks and deliverables) the members are involved in triggers the number of emails that are sent by the Basecamp. The management of this tool continues to lie with the NCT to restrict sub-project communication to active members (teams) and try to tailor the communication to actual needs of the resp. members.

Related deliverable(s): 1.1a (M18), 1.1b (M36),
Target groups: Network Coordination Team, all ERN-LUNG members
Task 2 – Organization of the ERN-LUNG Board meeting and an additional Medical Steering Committee meeting
The Board meetings of the ERN-LUNG Board are expected to take place in Frankfurt late February or the beginning of March of each year (expected number of participants: approx. 80 to 100). The Coordinator and the Network Coordination Team will prepare the agenda for the Board meetings as well as for meetings of the other bodies of ERN-LUNG (Patient Board and Medical Steering Committee in particular), sort out the logistics (date, venue, travel and accommodation for participants), identify items requiring votes (e.g. change of by-laws), ensure that key materials are developed for discussion and approval at the meeting and prepare a post-meeting report with full minutes of discussions.

A meeting of the Medical Steering Committee (expected number of participants: approx. 12 to 20) is also planned to take place in September of each year of funding, during the ERS Congress, to discuss progress, approve plans developed during the first semester the resp. year and review activities to be undertaken by M12, M24, or M 36.
This includes Milestone1 which will only be met if a list of gaps and SOPs for inclusion of Supporting Partners and/or Contact Points have been consented.

Related deliverable(s): 1.2a (M9), 1.2b (M21), 1.2c (M33)
Target groups: all members of ERN-LUNG, patient group representatives


Dissemination by lead UKF

Start month:1 - End month: 36

Task 1 - Dissemination Plan - update
ERN-LUNG has developed a five-year dissemination plan, including internal and external communications. The ERN-LUNG Advisory Board has been established to aide ERN...
Task 1 - Dissemination Plan - update
ERN-LUNG has developed a five-year dissemination plan, including internal and external communications. The ERN-LUNG Advisory Board has been established to aide ERN-LUNG in achieving dissemination of its activities and raise awareness about its services.
As identified in the ERN-LUNG five-year plan, the external communication activities will be towards scientists, patients and other laypeople as well as political decision makers to create more awareness of ERN-LUNG. It will entail publications in scientific journals, the use of the ERN-LUNG webpage (www.ern-lung.eu), and creation of dedicated social media channels, special features in the lay press, organisation of sessions at medical congresses, etc. Translation in various languages to increase the accessibility of content created within the Network will also be supported. This will be made feasible with the assistance of Patient Representatives who can support further dissemination of work done within ERN-LUNG (e.g. through social media) and with support from HCPs involved in the Network who all have a good command of English and can serve as country liaison to ensure knowledge is shared at national level.

Related deliverable(s): 2.1a (M6), 2.1b (M18), 2.1c (M30)
Target groups: medical community, patients, general public

Task 2 – Report on activities and achievements related to recruitment of Supporting Partners and/or Contact Points to fill the gaps in geographical coverage of ERN-LUNG
ERN-LUNG’s Year 3 to 5 programme in accordance with the five-year plan will focus on adding more supporting Partners, Affiliated Partners and – if the next call should be published during this year – will add more members to the network as to cover all Member States. The addition of top-level experts in the respective fields will increase our potential but will not automatically help in disseminating this knowledge to the best of the patients. We have therefore decided that the addition of as many Contact Points and collaborating partners as possible is a logical next step for the development of our network. The many Health Care providers who do not have the same level of knowledge have to be connected to the network and its services as well. Only with both top-level experts and the many other Health Care providers we will be able to reach the entire population of patients affected by rare respiratory diseases.

Related deliverable(s): 2.2a (M9), 2.2b (M21), 2.2c (M33)
Target groups: all ERN-LUNG members and partners, medical community and patients inside and outside of ERN-LUNG


Data Gathering by lead UKF

Start month:1 - End month: 36

Task 1 - Integrate ERN-LUNG Registry Data Warehouse into ERN-LUNG and among its members (report)
With the positive evaluation of the ERN-LUNG registry application (RD REGISTRY DATA WAREHOUSE, EU proje...
Task 1 - Integrate ERN-LUNG Registry Data Warehouse into ERN-LUNG and among its members (report)
With the positive evaluation of the ERN-LUNG registry application (RD REGISTRY DATA WAREHOUSE, EU project 777295) ERN-LUNG has the chance of achieving full interoperability of all its Core Networks’ registries and establish fully interoperable registries for those diseases or disease groups where no registries exist. The starting date of this 3rd Health Programme project was July 1st 2018. The NCT and all members will have to contribute to make sure this will not remain a project of registry specialists in Paris, Dundee, Münster, and Frankfurt but help develop into another cross fertilizing and interconnecting activity of ERN-LUNG instead.

The NCT will support the integration of other funded projects clearly by separating all activities and taking care not to have any double funding nor undue overlap between the projects.

Quality of Care by lead UKF

Start month:1 - End month: 36

Task 1 - Clinical care pathways including cross-border Online Expert Advice System, cross-border online consultations, cross-border referral
Clinical care pathways are being developed to help standard...
Task 1 - Clinical care pathways including cross-border Online Expert Advice System, cross-border online consultations, cross-border referral
Clinical care pathways are being developed to help standardize the way patient requests and presentations are harmonized throughout the whole network.
This includes Milestone 2 which will be the consensus among all stakeholders about the clinical pathways. The ultimate goal is, that clinical pathways across all Core Networks are consented and implemented.
Task 2 Establish cross-border Online Expert Advice System (EXABO)
Task 3 will establish cross-border online consultations which will enable all member HCPs to participate in cross-border online consultations.
Task 4 will consist in establishing cross-border referrals
A patient management workflow (patient pathway) will be developed defining criteria when advice (level 1), consultation (level 2), or referral (level 3) will be used for RD patients. After setting up the infrastructure within ERN-LUNG for cross-border advice (level 1; see above Activity 2, Task 2), consultation (level 2) and referral (level 3) constitute the main ways to achieve one central objective of ERN-LUNG: Cross-border care for patients with respiratory diseases. ERN-LUNG will offer these services to all patients and care team members across all EU Member States.
Level 1: Online expert advice systems require relatively little European resources, since the major workload is offered as “good will” activity on a national (language zone) basis. European resources are only needed for coordination and cross-border quality control.
Level 2: When establishing cross-border consultations, a CPMS like the one established for all ERNs is a prerequisite. Preparing and coordinating such cross-border consultations is one of the major steps to be taken during year two.
Not all prerequisites for cross-border consultations have been established, i.e. we do not know how the HCPs involved will get paid for these services.
Level 3: The last level of cross-border care is the referral of patients for face to face consultations in one of the ERN’s HCP in- or out-patient facilities.

Related deliverable(s): 4.1a (M21), 4.1b M36)
Target groups: all ERN-LUNG members and partners, medical community, patients
Task 2 - Establish cross-border Online Expert Advice System (Level 1 of cross-border services)
While the CF Core Network already has many years of experience with an Online Expert Advice System (ECORN-CF; this was started as a European pilot project), other Core Networks will have to implement and learn how to make best possible use of this technology.
The system has been developed during year 1 of ERN-LUNG and will be rolled out for all Core Networks and their teams during year 2. Each Core Network will have to establish coordinating teams according to language zones, and cross-border quality control has to be implemented by the NCT.

Related deliverable(s): 4.2a (M21), 4.2b M36)

Target groups: all ERN-LUNG members

Task 3 - Establish cross-border online consultations (Level 2 of cross-border services)

The ERN CPMS has been developed to support the ERNs in offering online video consultations etc. Care team members of member HCPs can upload pseudonymised patient data or imaging which then can be discussed by expert panels within the ERN. The system (CPMS) is available. The consultations will mainly be within the borders of Core Networks. During the process of the gathering of patient cases to be discussed, we realized that it will be necessary to tailor specific expert panels with individual selections of experts for the cases we have on our list. Not all prerequisites for this type of cross-border care have been clarified, yet. The remuneration of the time spent for these consultations is not clear at the time of writing this proposal

Related deliverable(s): 4.3a (M21), 4.3b M36)
Target groups: all ERN-LUNG members

Task 4 - Establish cross-border referral (services)

One key
Training by lead UKF

Start month:1 - End month: 36

Task 1 – Liaise with ELF and patient academy (for patients) and with ERS (for clinical care team members) for organizing meetings, workshops, and training programs (schedule/report)
Milestone3: Liai...
Task 1 – Liaise with ELF and patient academy (for patients) and with ERS (for clinical care team members) for organizing meetings, workshops, and training programs (schedule/report)
Milestone3: Liaison has been fixed (report)
This activity contains the Milestone 3 being the finalized agreement with ERS and ELF. The Coordinator will collaborate with the Patient Board and Professional Training and Continued Medical Education Functional Committee to create a program for training and education activities within ERN-LUNG for patients and healthcare professionals. For the care team members the NCT has the option to participate in the activities of the European Respiratory Society as well as some of the European disease specific scientific or clinical Societies. They all have lots of educational activities which can easily be used for education in the field of rare respiratory diseases. The same is true for patient education activities, where the European Lung Foundation (ELF) offers numerous generic and specific education programs, and they have offered to join forces with ERN-LUNG.

Research by lead UKF

Start month:1 - End month: 36

Task 1 - Webinars, workshops, and hands-on training labs on Clinical Trials Network development
This activity contains the Milestone 4 which entails consent to the webinar/seminar program.. During yea...
Task 1 - Webinars, workshops, and hands-on training labs on Clinical Trials Network development
This activity contains the Milestone 4 which entails consent to the webinar/seminar program.. During year one ERN-LUNG members have identified that the development of Clinical Trials Networks within ERN-LUNG according to the template of the CF Clinical Trials Network (ECFS CTN) is one priority of ERN-LUNG. ERN-LUNG in close cooperation with the ERS will present a webinar about the chances and pitfalls of Clinical Trials Networks and will organize workshops, and hands-on training labs on Clinical Trials Network development together with the CF Core Network and the European Cystic Fibrosis Society.

Related deliverable(s): 6.1a (M9), 6.1b (M21), 6.1c (M33)
Target groups: all ERN-LUNG members, medical community, other ERNs, patients

Task 2 –Annual report on research projects - update
Regular reporting of research activities within and outside the network as well as dissemination of knowledge to other stakeholders is in the primary focus of ERN-LUNG. The updated specific yearly research report will be put together by the NCT together with the Communication and Outreach Functional Committee and the Research and Clinical Trials Functional Committee.

Evaluation by lead UKF

Start month:1 - End month: 36

Task 1 – Liaise with EURORDIS (Eurobarometer: Rare disease awareness survey) for patient ‘satisfaction’ analysis
In the first year, the deputy Coordinator, the Network Coordination Team, with su...
Task 1 – Liaise with EURORDIS (Eurobarometer: Rare disease awareness survey) for patient ‘satisfaction’ analysis
In the first year, the deputy Coordinator, the Network Coordination Team, with support from the Advisory Board, the Patient Board, and the Patient Recorded Outcomes and Quality of Life Committee have developed an evaluation plan for ERN-LUNG, iwhich includes tools for monitoring and reporting on the network’s progress towards implementation of the annual and multi-annual plans and specific performance and outcome indicators for Healthcare Providers. Due to the fact, that the network will only start to offer clinical services to patients in the second year, the evaluation will have to be adapted during the following years. Patient satisfaction is a key issue and monitoring and evaluation will be developed together with the ERN Coordinators Group (Working group on monitoring and quality improvement). Together with representatives from EURORDIS, we will seek to implement ERN specific questions within the well-established ‘Eurobarometer: Rare disease awareness’ survey to address a large number of patients from all over Europe with a wide spectrum of diseases.

Task 2 – Comprehensive ERN-LUNG report
The Coordinator and the Network Coordination Team will be in charge of developing the 18-monthly report of ERN-LUNG which will cover information about each activity including research projects and clinical trials.

Details
Start date: 01/03/2019
End date: 28/02/2022
Duration: 36 month(s)
Current status: Ongoing
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 589 163,00