Presentation template of the Competence Network (English)

Title

Research for People

12.04.23

RESEARCH PROJECTS

NATIONAL REGISTER

ADVISORY BOARD

SELF-HELP GROUPS +PARENT ORGANIZATIONS

REHABILITATION CENTERS

GENERAL PRACTITIONERS

NETWORK OFFICE

RESEARCH INSTITUTIONS

HEART SURGEONS

CARDIOLOGISTS

PATIENTS

PUBLIC RELATIONS

HORIZONTAL RESEARCH NETWORK

VE

RT

ICA

L R

ES

EA

RC

H A

ND

HE

AL

TH

CA

RE

NE

TW

OR

K

Structure of the Network

PEDIATRIC CARDIOLOGISTS

UNIVERSITY HOSPITALS/HEART INSTITUTES

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Network Research

GENDER

EPIDEMIOLOGY

HEALTH CARE RESEARCH

NON-INVASIVE RV IMAGING

SUBJECTIVE EXERCISE TOLERANCE

OBJECTIVE EXERCISE TOLERANCE

NEW PROJECTS

STANDARDIZATION

GUIDELINES

EDUCATION

PUBLIC RELATIONS

AFTER-LOAD PULMONARY ARTERIOPATHY MYOCARDIUM RV- HEART FAILURE

CENTRALDATABASE

+

REGISTER

AFTER-LOAD

PULMONARY ARTERIO

PATHY

COMBINED-LOAD

FALLOT-TETRALOGYA

FT

ER

-LO

AD

TH

ER

AP

Y

PU

LM

ON

AR

Y A

RT

ER

IOL

OP

AT

HY

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Standardised Study Schedule

Patients with Basic data base Basic data base

• Tetralogy of Fallot• Peripheral pulmonary

stenosis• Pulmonary hypertension• Right ventricular failure

Clinical examination

MRI

Echocardiography

Objective exercise tolerance

Subjective exercise tolerance

Gender-specific aspects

Specific parameters Specific parameters

Time in months

Central data base

0 12

Clinical examination

MRI

Echocardiography

Objective exercise tolerance

Subjective exercise tolerance

Gender-specific aspects

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Research for Health

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Research for Health

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survival rate (%)

year

Survival Rate of Children with CHD

0

10

20

30

40

50

60

70

80

90

100

1940 1950 1960 1970 1980 1990 2000

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0

50000

100000

150000

200000

250000

300000

350000

400000

1970 - 74 1975 - 79 1980 - 84 1985 - 89 1990 - 94 1995 - 99 2000 - 04 2005 - 09 2010 - 14 2015 - 19 2020 - 24 2025 - 29years

patients (n)

Live births with CHD (0,8 % of all live births)

Children with CHD (90 % of live births with CHD)

18-year-olds with CHD (80 % of children with CHD)

Adults with CHD

Estimated Clinical Relevance of CHD in the next Years

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Most common malformation in humans

0,7 - 1 % of all life births

Variety of malformations of the heart and the greatarteries

30 % mild, 45 % moderate, 25 % severe defects

Great suffering for those affected and the whole family

Congenital Heart Defects

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The Minimal Data Set

Diagnosis

Operation/s (kind, date, location)

Intervention/s (kind, date, location)

Self assessment

Family history

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National Register for CHD

Founded by German associations

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Next Steps

Studies with

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Support of the Competence Network for Congenital Heart Defects

Bundesverband Herzkranke Kinder e. V.

By Patients and Self-help Groups

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Support of the Competence Network for Congenital Heart Defects

Herzkind e. V. InteressengemeinschaftDas herzkranke Kind e. V. (IDHK)

BundesvereinigungJEMAH e. V.

By Patients and Self-help Groups

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Consent of Parents/Patients to participate in Studies

[National Register for Congenital Heart Defects, 03/2007, n = 24,076]

yes 97 %

no 3 %

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IT-Infrastructure

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Data Protection

Remote data entry

PID-GeneratorPatientlist

Pseudonym generating service

Researchdatabase

Studydatabase

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Internal Executive Committee

Prof. Dr. med. Peter E. Lange (Speaker)

Dr. med. Ulrike Bauer (Managing Director)

Prof. Dr. med. Matthias Gutberlet

Prof. Dr. med. Hans-Werner Hense

PD Dr. Siegfried Kropf

PD Dr. med. Brigitte Stiller

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Executive Board 2003 - 2006

Prof. Dr. med. Günter Breithardt (Vice Chairman)

Prof. Dr. med. Sabine Däbritz

Dr. med. Fokko de Haan

Prof. Dr. med. Dr. h.c. mult. Roland Hetzer

Prof. Dr. med. Marie-Christin Seghaye

Dr. med. Karl Robert Schirmer

Prof. Dr. med. Achim A. Schmaltz (Chairman)

DGK

DGTHG

DGK/BNK

DGTHG

DGPK

DGPK/ANKK

DGPK

National Register for CHD

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National Register for CHD

Executive Board 2007 - 2009

Prof. Dr. med. Günter Breithardt (Chairman)

Prof. Dr. med. Sabine Däbritz

Dr. med. Fokko de Haan

Prof. Dr. med. Roland Hetzer (Vice Chairman)

Prof. Dr. med. Deniz Kececioglu

Dr. med. Karl Robert Schirmer

Prof. Dr. med. Achim A. Schmaltz

DGK

DGTHG

DGK/BNK

DGTHG

DGPK

DGPK/ANKK

DGPK

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Appointed by the Federal Ministry of Education and Research/German Aerospace Center

Prof. Dr. med. Frank A. Flachskampf (Echocardiography)

Prof. Dr. med. Johannes Haerting (Epidemiology and Biometrics) – Vice Chairman

Prof. Dr. med. Martin Otto Hess (Cardiology)

Prof. Dr. med. Hans Carlo Kallfelz (Pediatric Cardiology) – Chairman

Prof. Dr. med. Rüdiger Klar (Biometrics und Informatics)

Prof. Dr. med. Ingrid Oberhaensli-Weiss (Pediatric Cardiology)

Prof. Dr. med. Erwin Notker Oechslin (Cardiology)

Prof. Dr. med. Ursula Ravens (Pharmacology)

Prof. Dr. med. Rainer Rienmüller (Radiology)

Prof. Dr. med. Berthold Schneider (Biometrics und Informatics)

Prof. Dr. med. Götz von Bernuth (Pediatric Cardiology)

Advisory Board

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Purpose according to charter

Collection of data of patient with CHD

for epidemiological studies

as starting base for clinical studies

National Register for CHD

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Data Protection Requirements

Economical responsible for long-time projects

Patient information/-consent

Protection of person-related data

Definition of the objectives of the Register

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National Register for CHD

This Register is to function as a link between pediatric cardiologists, heart surgeons,epidemiologists and social physicians to form a basis for efficient research.

Valid data from the Register can be an essential contribution to health research concerning a patient group with a chronic illness that has an major impact on eachindividuals's life.

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Epidemiological projects

EP 1.0

EP 1.1

EP 1.2

EP 1.3

EP 1.4

EP 1.5

EP 2.0

National Register for congenital heart defects (registered association)

Family-based investigation of the genetic causes

Integrated Project – Heart Failure and Cardiac Repair (HeartRepair)

Sense of coherence as mediator of health-related quality of life inadolescents with congenital heart disease (CoalaH)

Quality of life and social situation of adult patients (LESSIE)

Living with congenital heart defects – creating patient empowerment by new ways of communication

Prevalence of congenital heart defects in newborns in Germany (PAN)

Funded Projects 2nd Period

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Clinical Studies

HP 3.1

HP 3.3

HP 4.2

HP 4.3

NP 4

Therapy of the pulmonary artery hypertension with Sildenafil in Eisenmenger patients

Bosentan for decrease of pulmonary artery resistance after Fontan operation

Early reintervention in children after repair of tetralogy of Fallot: Prospective analysisof „timing“ and efficacy using cardia MRI and tissue Doppler indices

Multicentric prospective analysis of factors influencing the results of correctiveoperation in tetralogy of Fallot

Cardial resynchronisation therapy for treatment of patients with cardiac insufficiency and congenital heart defects – new therapeutical approaches

Funded Projects 2nd Period

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Research for People

www.kompetenznetz-ahf.de

12.04.23

www.kompetenznetz-ahf.de

12.04.23

www.kompetenznetz-ahf.de