Centre for Rare Musculoskeletal Autoimmune and ... Dr... · Kerckoff Klinik gGmbH – Ulf Mueller Ladner University of Cologne – Thomas Krieg Azienda Ospedaliero Universitaria Careggi

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: 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: 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.


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 (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


ReCONNET Governance Structure


Patients Involvement in ReCONNET

PReps PReps

PReps

PReps PReps

PReps PReps PReps

PReps

PReps

PReps

PReps

PReps

PReps

PReps

Patient Organisations Working Group


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


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


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


WP2 – EVALUATION (M3-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


WP3 – DEVELOPMENT OF STANDARD CLINICAL GUIDELINES AND PRACTICE (M4-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


WP4 - Adaptation and definition of the contents of the central ERN IT Platform and environment (M6-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


WP5 – Economic and organizational issues (M7-M12)


Task 5.1.1 Development of

instruments for the

assessment of organizational

and economic issues related

to rCTDs

16


WP6 - Communication and dissemination (M6-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


WP7 - Networking and sustainability of ERN (M2-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


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


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

Documents

Centre for Rare Musculoskeletal Autoimmune and ... Dr... · Kerckoff Klinik gGmbH – Ulf Mueller Ladner University of Cologne – Thomas Krieg Azienda Ospedaliero Universitaria Careggi