ERN-LUNG European Reference Network for Rare Diseases of ...

ERN-LUNGEuropean Reference

Network for Rare Diseases of the

Respiratory System-

An update

TOF WagnerCoordinator

Frankfurt, Germany

• ERNs are networks involving centres of expertise, healthcare providers and laboratories across Europe. The overarching objective of European Reference Networks is that patients have an improved access to quality diagnosis, care and treatment.

• ERNs will help facilitate access to diagnosis and treatment by providing easy access to knowledge and experience, medical research and training, and resources in the area of rare or low prevalence complex diseases or conditions.

GOVERNMENT, ADVOCACY

ORGANIZATIONS

ACADEMIA, RESEARCHERS

PATIENT ASSOCIATIONS,

HEALTH AGENCIES

HEALTHCARE PROVIDERS, CLINICIANS

EDUCATION, TRAINING & E-

LEARNING

PATIENT CARE, SATISFACTION & QUALITY OF LIFE

DIAGNOSTICS, TREATMENT, CLINICAL GUIDELINES

HEALTH TECHNOLOGIES, RESEARCH & INNOVATION

PURPOSE OF ERNs

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1

How we started 60 Members How it looks now More than 90 M + AP + SP

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1

MISSION: To ensure and promote excellence in care and research to the benefit of patients affected by rare respiratory disease

VISION: 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

OBJECTIVES: 5-year plan of ERN-LUNG aims at fulfilling the following objectives-Establishment of ERN-LUNG-Improving cross-border care-Strengthen research with registries and Clinical Trial Networks-Easy access to quality information via online resources-Training of patients and professionals

ERN-LUNG

ERN-LUNG STRUCTURE & GOVERNANCE

ERN Advisory Board (including ERS/ELF, umbrella patient organisations, policy-makers, foundations, trade

organisations, ethics specialists)

Adult ILDs

Paediatric ILDs

ERN-LUNG Board(Representatives from all 60 healthcare providers, patient groups and other third party stakeholders)

Patient Board

Network Coordination Team

Conference Committee (fac.)

Ad hoc & Other (fac.)

Paediatric PH

Pulmonary arterial

hypertension

Chronic thromboembolic

PH

PH due to chronic respiratory or left

heart disease

Clinical Trial

Standards of Care

Patient Registry

ECFS Working

group

Interstitiallung disease

(ILD)

Cystic fibrosis(CF)

Primary CiliaryDyskinesia

(PCD)

PulmonaryHypertension

(PH)

nonCF-Bronchiectasis

(nCF-BE)

Alpha1 antitrypsindeficiency

(AATD)

Mesothelioma(MSTO)

Chronic lungallograft

dysfunction(CLAD)

Other rare lung diseases

(ORLD)

Core Networks

Communication & Outreach

Training & Continued

MedicalEducation

Research & Clinical Trials

Cross-border care

Ethical issues Registries & Biobanks

Patient recorded

outcomes & Quality of Life

QualityManagement

Guidelines & Best Practice

of Care

Functional Committees

Medical Steering Committee(Leadership of Core Networks)

ECFS Working

group




Adult ILDs

Paediatric ILDs

ERN-LUNG Board(Representatives from all healthcare providers, patient groups and other third party stakeholders)

Patient Board




Paediatric PH

Pulmonary arterial

hypertension


PH


heart disease

Clinical Trial

Standards of Care

Patient Registry

ECFS Working

group


(ILD)

Cystic fibrosis(CF)


(PCD)


(PH)


(nCF-BE)


(AATD)

Mesothelioma(MSTO)


dysfunction(CLAD)


(ORLD)

Core Networks



MedicalEducation


Cross-border care


Patient recorded


QualityManagement


of Care






Adult ILDs

Paediatric ILDs


Patient Board




Paediatric PH

Pulmonary arterial

hypertension


PH


heart disease

Clinical Trial

Standards of Care

Patient Registry

ECFS Working

group


(ILD)

Cystic fibrosis(CF)


(PCD)


(PH)


(nCF-BE)


(AATD)

Mesothelioma(MSTO)


dysfunction(CLAD)


(ORLD)

Core Networks



MedicalEducation


Cross-border care


Patient recorded


QualityManagement


of Care



COORDINATOR

Thomas WAGNER

VICE COORDINATOR

Marc HUMBERT

PROJECT MANAGERS

Olivia STEINMANNSabine STEMLER

PROJECT MANAGER

Keerthana IYER




Adult ILDs

Paediatric ILDs


Patient Board




Paediatric PH

Pulmonary arterial

hypertension


PH


heart disease

Clinical Trial

Standards of Care

Patient Registry

ECFS Working

group


(ILD)

Cystic fibrosis(CF)


(PCD)


(PH)


(nCF-BE)


(AATD)

Mesothelioma(MSTO)


dysfunction(CLAD)


(ORLD)

Core Networks



MedicalEducation


Cross-border care


Patient recorded


QualityManagement


of Care






Adult ILDs

Paediatric ILDs

ERN-LUNG Board(Representatives from all 60 healthcare providers, patient groups and other third party stakeholders)

Patient Board




Paediatric PH

Pulmonary arterial

hypertension


PH


heart disease

Clinical Trial

Standards of Care

Patient Registry

ECFS Working

group


(ILD)

Cystic fibrosis(CF)


(PCD)


(PH)


(nCF-BE)


(AATD)

Mesothelioma(MSTO)


dysfunction(CLAD)


(ORLD)

Core Networks



MedicalEducation


Cross-border care


Patient recorded


QualityManagement


of Care



ECFS Working

group

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1




ERN-LUNG

ERN-LUNG Cross-border Care

For a patient, where cross-border referral is being considered by a member of ERN-LUNG, the following questions have to be answered with YES:I Has the problem been addressed within EXABO?

If NO, this has to be done.II Has the problem been discussed during a cross-border

teleconsultation (CPMS)? If NO, this has to be done.

III Has the Panel of Experts of ERN-LUNG recommended cross-border referral to a specific center of expertise?

If NO, this has to be done.IV Has the NCP of the country of residence of the patient

been contacted? If NO, this has to be done.

Only after having a clear YES for all four consecutive questions, the leading physician caring for the patient is endorsed by ERN-LUNG to state that the patient needs cross-border referral.

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1




ERN-LUNG

REGISTRIES AND CLINICAL TRIALS NETWORKS (CTNs)

All consultations

Patient recordedoutcomes

Pre-existingand/or new

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1




ERN-LUNG

Expert Advisory Board ERN-LUNGEXABOwww.exabo.eu

IDEA: easy access to European top level expert advice • in any Member State • for any Rare Disease of the Respiratory System• In your native language• Quality assured

MODEL: ECORN-CF • A former pilot project of the EC• Now sustainably financed by CF patient organizations

EXABO:• goes online March 4, 2019, EOB• English and German• All Rare Diseases of the Respiratory System

http://www.exabo.eu/

ERN-LUNG




Twinning Fellowships

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1



OBJECTIVES: 5-year plan of ERN-LUNG aims at fulfilling the following objectives-Establishment of ERN-LUNG ✅-Improving cross-border care ✅-Strengthen research with registries and Clinical Trial Networks ✅-Easy access to quality information via online resources ✅-Training of patients and professionals ✅

ERN-LUNG is happy to be inclusive and we will collaborate with all HCPs who want to

ERN-LUNG

ERN-LUNG

33

2

6

5

1

9

2

3

10

15

1

ERN-LUNG.eu

EXABO.eu

ejprarediseases.org

eu-rd-platform.jrc.ec.europa.eu

ERN-LUNG

ERN-LUNG European Reference Network for Rare Diseases of ...

Documents

Transcript of ERN-LUNG European Reference Network for Rare Diseases of ...