centre for rare musculoskeletal autoimmune and ... dr... · kerckoff klinik ggmbh – ulf mueller...
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Centre for Rare Musculoskeletal Autoimmune and
Autoinflammatory Diseases of SCJU Cluj-
ERN ReCONNET member
Dr. Laura Damian, MD PhD
Clinica Reumatologie, Spitalul Clinic Judetean de Urgenta Cluj
Rare diseases networks
24 ERNs ROMANIA
Spit. Clinic Psihiatric “Al.Obregia”
EpiCARE, Endo-ERN
Spit. Colentina ERN Skin
Spit. Cl. Jud. de Urgenta Cluj
ReCONNET
Spit. de Urg. B. Cardiovasc. “CC Iliescu”
GUARD-HEART
IOCN Cluj- Endo-ERN
Reteaua de anomalii congenitale multiple- ITHACA
ec.europa.eu/health/ern
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ReCONNET (Rare Connective and Musculoskeletal Diseases Network)
Spitalul Clinic Judetean de Urgenta Cluj, Clinica Reumatologie,
Centrul de boli rare musculo-scheletale autoimmune si autoinflamatorii
Dir: Prof. Dr. Simona Rednic
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ERN: Mission and Vision Statement
To facilitate access to better and safer healthcare, define proper organizational assessment and identify standard and cost effective pathways for the management of rCTDs.
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ERN: Mission and Vision Statement
To deliver high quality and homogeneous care across EU borders
To facilitate information sharing and circulation as well as patients
and health care professionals movement across borders.
To optimize available resources and deliver cost effective care.
To empower patients in the management of their disease.
To increase knowledge on rare and complex conditions.
To develop recommendations and quality guidelines
To facilitate epidemiological, clinical, translational research.
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
24 Approved ERNs
ERN BOND ERN CRANIO Endo-ERN ERN EpiCARE ERKNet ERN-RND ERNICA ERN LUNG ERN Skin ERN EURACAN ERN EuroBloodNet ERN eUROGEN
ERN EURO-NMD ERN EYE ERN GENTURIS ERN GUARD-HEART ERN ITHACA MetabERN ERN PaedCan ERN RARE-LIVER
ERN ReCONNET ERN RITA ERN TRANSPLANT-CHILD VASCERN
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ERN ReCONNET (26 HCPs)
• Belgium 3
• France 4
• Germany 4
• Italy 8
• Portugal 2
• Netherlands 3
• Romania 1
• Slovenia 1
4
2
4
8
2
1
2
1
Ghent University Hospital – Vanessa Smith
Ghent University Hospital – Francisca Malfait
Clinique Universitaires Saint-Luc – Frederic Houssiau
University Hospital of Lille – Eric Hachulla
University Hospital of Strasbourg – Thierry Martin
Assistance Publique Hopitaux de Paris – Zahir Amoura
Cochin Hospital – Luc Mouthon
Charité - University Medicine Berlin – Gerd Burmester
University Medical Centre Dusseldorf – Matthias Schneider
Kerckoff Klinik gGmbH – Ulf Mueller Ladner
University of Cologne – Thomas Krieg
Azienda Ospedaliero Universitaria Careggi Firenze – Marco Matucci
Cerinic
Azienda Ospedaliero Universitaria Pisana - Marta Mosca
Spedali civili di Brescia – Angela Tincani
Policlinico San Matteo di Pavia – Carlomaurizio Montecucco
Azienda Ospedaliera Universitaria San Martino Genova – Maurizio Cutolo
Azienda Ospedaliera di Padova - Andrea Doria
San Camillo Forlanini – Marco Castori
IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano – Lorenzo
Beretta
Erasmus MC Rotterdam – PM Van Hagen
University Medical Center Utrecht – Jaap van Laar
Leids Universitair medisch Centrum – Jeska de Vries-Bouwstra
Centro Hospitalar Lisboa Norte – Joao Fonseca
Hospital Curry Cabral, Centro Hospitalar de Lisboa Central - Francisca
Fontes
Spitalul Clinic Judetean de Urgenta Cluj – Simona Rednic
University medical Centre Ljubljana – Tadej Avcin
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ReCONNET Governance Structure
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
Patients Involvement in ReCONNET
PReps PReps
PReps
PReps PReps
PReps PReps PReps
PReps
PReps
PReps
PReps
PReps
PReps
PReps
Patient Organisations Working Group
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ReCONNET Patient Representatives
ReCONNET Patient Representatives
Charissa Frank Bindweefsel.be
Jürgen Grunert Deutsche EhlersDanlos-Initiative e.V.
Ilaria Galetti Federation of European Scleroderma Associations (FESCA)
Sara Badreh Lupus Europe
Marianne Riviere Association Française du Lupus et autres Maladies AutoImmunes
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
ReCONNET WPs 5-years workplan
WP Number WP Title Start month End month
1 Coordination and Management 1 60
2 Evaluation 1 60
3 Development of standard clinical guidelines and
practice
1 36
4 Adaptation and definition of the contents of the
central ERN IT platform and environment
6 54
5 Economic and organizational issues 7 60
6 Communication and Dissemination 1 60
7 Networking and sustainability of the ERN 7 60
8 Education 13 60
9 Ethical and legal issues, and privacy 18 60
10 Data integration and sharing 13 60
11
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP1 - COORDINATION AND MANAGEMENT (M1-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 1.1 - Building management structure
Task 1.1.1 Kick-off meeting
Task 1.1.2 Election of representatives and identification
of members of the ERN bodies
Task 1.1.3 Identification of working teams and WPs
Leaders
Task 1.1.4 Development and approval of the Network
work plans
Task 1.1.5 Development and approval of the Operating
Procedures Manual
Task 1.2 Communication within ERN members, and
communication with European Commission/Chafea
Task 1.2.1 - Meetings and reporting
12
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP2 – EVALUATION (M3-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 2.1 - Development of the evaluation strategy
Task 2.1.1 Definition of system and indicators for
quality evaluation
Task 2.1.2 Appointment of the External Advisory
Board members
Task 2.1.3 Development and approval of the draft
and final quality plan
Task 2.2 Implementation of the evaluation strategy
Task 2.2.1 Ongoing monitoring
13
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP3 – DEVELOPMENT OF STANDARD CLINICAL GUIDELINES AND PRACTICE (M4-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 3.1 - Deep revision of the existing
guidelines and practice for rCTDs
Task 3.1.1 Review of the literature and screening
of websites and documents of scientific Societies
Task 3.1.2 Survey among HCPs members to map
current practice
Task 3.1.3 Design and conducting of a survey
among patients, authorities, healthcare providers,
etc.
14
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP4 - Adaptation and definition of the contents of the central ERN IT Platform and environment (M6-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 4.1 - Co-design and
development of IT services
(eLearning, eHealth, etc.)
Task 4.1.2 Meetings for the
co-design of the website
content
Task 4.2.1 Survey for the
assessment of patients,
families and caregivers for the
design of eHealth and
eLearning tools
15
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP5 – Economic and organizational issues (M7-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 5.1.1 Development of
instruments for the
assessment of organizational
and economic issues related
to rCTDs
16
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP6 - Communication and dissemination (M6-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 6.1 - Internal and
external dissemination and
communication
Task 6.1.1 Launch of the ERN
(logo, leaflets, etc.)
Task 6.1.2 Communication
and dissemination plan
Task 6.1.3 Exhibition booth at
EULAR Congress in June
2017 at Madrid
Task 6.1.4 Templates for
newsletter and presentations
Task 6.1.5 Pilot creation of
groups for Social Networks
Task 6.1.6 Public update of
the website content
Task 6.1.7 Communication
and dissemination meetings
17
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
WP7 - Networking and sustainability of ERN (M2-M12)
Tasks M1 M2 M3 M4 M5 M6 M7 M8 M9 M10 M11 M12
Task 7.1 - Development and
implementation of strategic
plan for networking and long-
term sustainability of the ER
Task 7.1.1 Identification of
the Networking and
Sustainability team
Task 7.1.2 Identification of
criteria and activities for the
networking activities
Task 7.1.3 Scouting of
mechanisms for the funding
of the ERN
18
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
List of Deliverables annual work-plan 2017
19
Related deliverables Due date
1.1 Report on the constitution of the main bodies of the ERN and election of
representative
1.2 Management plan and tools
M3
M6
2.1 Evaluation plan including ongoing monitoring and evaluation processes
monitoring M6
3.1 Report on current guidelines and practices for rCTDs M12
4.1 Report on co-design of website content and services
4.2 Report on the co-design of the eTools
M12
M12
6.1 ERN communication and dissemination plan
6.2 ERN leaflet, posters and public presentations
6.3 First newsletter release and congress
M6
M12
M12
7.1 Networking and Sustainability plan M12
“ERN-ReCONNET was funded by the European Union’s Health Programme (2014-2020).”
Contact [email protected]
Advantages • Faster diagnosis
• Dedicated specialists in the field, real-time communication
• telemedicine
• dedicated medical resources
– Day Hospital for diagnosis and for infusions
– Dedicated ambulatories
• Specific assessment and monitoring according to international protocols
• research, new therapies
• Data collection for registries
• training and education of HCP
• Pacients education
• Facilitation of patients’ asociatiations
– increased visibility and knowledge on the disease
– Mutual support
– Increased access to therapies
– Proposals for legislation
• Medical team- Patient relation
Opportunities
• Assessment of the current
practice for rCTD across
Europe
• Assessment of current
guidelines
• Experts network connection
• Access of patients with rare
diseases in clinical studies
• Increasing knowledge
• Scientific collaboration
• Alignment of
practice in the field
• Increased access of
patients to
medication
Challenges
• Statute of a Reference
Center?
• Expensive tests
payment?
• Off-label medication
prescription?
• Compassionate
prescription?
• Individual case?
• Financing?
• Guidelines
• Registries
• Legislation
• Local experts
commission
• telemedicine
• Scientific collaboration
• Grants, projects