Table Of Content. Gateway to Uncommon And Rare Diseases of the Heart... 2 Summary... 3 Work Package... 4

Transcription

1 Table Of Content Gateway to Uncommon And Rare Diseases of the Heart... 2 Summary... 3 Work Package... 4 To consolidate and extend the Network... 4 To concentrate knowledge and expertise to imporve clinical practice using best availabe evidence... 4 To improve quality and safety of healthcare services... 4 To guarantee accessibility to healthcare... 4 To promote research and innovation both in diagnosis and treatment... 4 To put the patient and their family in the centre of heathcare services... 4 To foster transparency in the delivery of healthcare through a global stategy communication... 4 Coordinator, Leader contact and partners... 6 Outputs... 7 Annaul Network Newsletter... 7 Updated list of Network HCPs rd year Working Programme... 7 Updated list of patient registries... 7 Cross-border patient pathways... 7 Training materials for professionals... 7 Annual education work plan... 7 PROMS questionnaires... 7 Benchmark studies... 7 Procedures of virtual work in place... 7 Annual report on research projects, publications, and clinical trials... 7 Network activity evaluation reports... 7 Page 1/10

2 Gateway to Uncommon And Rare Diseases of the Heart JA GPSD [705038] START DATE: 01/03/2018 END DATE: 28/02/2019 DURATION: 12 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: 3rd Health Programme ( ) PROGRAMME PRIORITY: - CALL: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018 TOPIC: ERN Specific Grant Agreements Year 2 EC CONTRIBUTION: EUR KEYWORDS: Familial Cardiomyopathies, Familial Electrical Heart Disease, Genetic Counseling, Presymptomatic Treatment, Rare Heart Disease, Special Electrophysiology Conditions, Sudden Cardiac Death Page 2/10

3 SUMMARY Project abstract ERN GUARD-Heart is an European Reference Network for rare or low prevalence complex diseases of the heart. In 2017, the Network brought together 24 expert HCPs from 12 EU Member States and established an organisational structure that facilitates planning, organising, leading and controlling the efforts and resources of the ERN to achieve the goals and objectives as defined in its multiannual Work programme for the Framework Partnership Agreement (FPA). To ensure a feasible and smooth deployment of the Network, in the initial phase, the Network covers 3 thematic areas (Familial electrical diseases, Familial cardiomyopathies, and Special electrophysiology conditions in children). In the 2nd year, pending official announcement of ERN extension rules, the Network aims to address 2 more areas (Congenital Heart Diseases and Other rare cardiac disease). The Network Members aim to provide better, safer, more efficient healthcare to all European patients with rare cardiac conditions on the basis of the best evidence available and (to foster transparency) through a global communication strategy. To achieve this purpose, the Network has defined 7 overarching goals in its multiannual Work programme for the FPA. Per goal, a number of specific objectives to be accomplished per year have been formulated. To achieve the formulated objectives for year 2 of the FPA, the Network will perform the following activities in the 2nd year: Network completion with 2 more thematic areas (see above), provision of networking services (meetings/conferences organisation, data gathering/sharing/dissemination, sharing of best practices), provision of training materials for health professionals), organisation of patient-physician meetings, and provision of safe and quality care to patients with rare cardiac diseases (by providing second opinion consultation service through CPMS, cross-border patient pathways, identification and development of PROMS, and development of internal benchmarks). Page 3/10

4 Work package Work Package 1: To consolidate and extend the Network Invitation to call for new HCPs and selection of appropriate HCPs in the new thematic areas, pending official EU announcement regarding ERN-extension rules. Furthermore there will be an evaluation of the 2nd year and the definition of the 3rd year WP. Work Package 2: To concentrate knowledge and expertise to imporve clinical practice using best availabe evidence There will be an update of shared patient registries, development of best practice identification tool and definition of procedure of new evidence collection and update. Furthermore the Network will focus on sharing of pathways and protocols and on the training & knowledge dissemination. Work Package 3: To improve quality and safety of healthcare services PROMS will be evaluated, the set-up of an internal benchmarking strategy and implementation of safety guidelines. Work Package 4: To guarantee accessibility to healthcare Page 4/10

5 Further implementation of CPMS with help of IT helpdesk. Evaluation of service feasibility for rare cases in low income countries. Work Package 5: To promote research and innovation both in diagnosis and treatment The identification of unmet diagnostic and treatment needs and development of innovation projects. Work Package 6: To put the patient and their family in the centre of heathcare services Patient and family participation, and patient self-knowledge and self-control will be promoted. Work Package 7: To foster transparency in the delivery of healthcare through a global stategy communication Implementation of internal and external communication channels. Page 5/10

6 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR Academisch Medisch Centrum bij de Universiteit van Amsterdam () MEIBERGDREEF DD AMSTERDAM Netherlands WEBSITE: PARTNERS No partners related to the current project Page 6/10

7 OUTPUTS Annaul Network Newsletter Annual Network Newsletter: the Annual Network Newsletter will be a compilation of the content of the bimonthly Newsletters of the Network published between March 2018 and February Updated list of Network HCPs D1 - Updated list of Network HCPs: pending EU regulations and calls for the inclusion of new HCPs in existing ERNs, in its 2nd year of existence, the Network aims to, 1) include new HCPs, in particular from Member States that currently do not have a full member in the ERN GUARD-Heart, and 2) address two additional thematic areas (congenital heart diseases in adults and children [thematic area 4] and other rare cardiac disease in adults and children [thematic area 5]). D1 will provide an updated list of all the member HCPs within the Network at the end of year 2. 3rd year Working Programme 3rd Year Working Programme: this report will describe the content of the Network s annual work plan for year 3 of the FPA (March 2018 February 2019). Updated list of patient registries Expected on: 01/09/2018 Updated list of patient registries: The Network has identified the setup of shared patient registries and databases as an essential tool to achieve a sufficient sample size for collaborative epidemiological and clinical research, assess the feasibility of future clinical trials, facilitate the planning of Page 7/10

8 appropriate trials, and support the enrolment of patients. D3 will provide a list of the patient registries established within the Network. Cross-border patient pathways Cross-border patient pathways: This report describes the pathways (routes) that patients with rare cardiac diseases across the European Union will take from their first contact with a treating physician, through referral to the ERN GUARD-Heart, to the completion of online consultation and an advice for diagnosis and/or treatment. The cross-border patients pathways can be used both for patient information and as an operational tool for referring physicians and Network members. Training materials for professionals Training materials for professionals: to ensure training and transfer of knowledge to young clinicians and to facilitate their enrolment as experts in future multidisciplinary teams, the Network aims to establish training materials such as specialized training programmes or educational conferences to residents, cardiologists and clinical geneticists. Annual education work plan Annual education work plan: the Network aim to transfer knowledge to patients and health professionals by generating educational materials for patients and professionals, by organizing training/educational seminars for patients and their families, and by setting up specialized training programmes for health professionals. The foreseen activities of the Network to achieve these goals and objectives will be presented in an annual education work plan. PROMS questionnaires Expected on: 01/09/2018 Page 8/10

9 PROMS questionnaires: patient reported outcome measures (PROMS) questionnaires will collect information from patients on their health and quality of life. The information collected from PROMS can help to monitor patient progress, help professionals and patients discuss health issues with each other and/or help to improve the quality of health services. Benchmark studies Benchmark studies: to improve quality and safety of healthcare services (goal 3 of the Network), and in particular the specific objective 3.3 (comparison of outcomes), the Network will perform internal benchmarks studies. D8 will describe the internal benchmark studies performed in Procedures of virtual work in place Expected on: 01/09/2018 Procedures for virtual work in place: this Report will describe the standardized healthcare processes for online consultation service through Clinical Patient Management System (CPMS). Annual report on research projects, publications, and clinical trials Annual report on research projects, publications, and clinical trials: this report will provide an updated list of all the research projects and/or clinical trials performed within the Network and a list of publications by the members of the Network. Network activity evaluation reports Network activity evaluation reports: this report provides an evaluation of the progress of the Network in the implementation of its planned activities and in Page 9/10

10 Powered by TCPDF ( the achievement of its specific objectives and targets for the second year (starting from March 2018). Page 10/10