Pediatric Cardiology Template - PowerPoint

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Pediatric Cardiology Template document sample

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Research for People

Title
Structure of the Network

HEALTH CARE NETWORK
VERTICAL RESEARCH AND
UNIVERSITY HOSPITALS/
HEART INSTITUTES
PEDIATRIC
CARDIOLOGISTS

CARDIOLOGISTS

HORIZONTAL RESEARCH NETWORK
HEART SURGEONS

RESEARCH INSTITUTIONS

ADVISORY BOARD RESEARCH PROJECTS NETWORK OFFICE PUBLIC RELATIONS

GENERAL PRACTITIONERS

NATIONAL REGISTER
REHABILITATION CENTERS

SELF-HELP GROUPS +
PARENT ORGANIZATIONS
PATIENTS

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Network Research

NON-INVASIVE RV IMAGING
STANDARDIZATION
SUBJECTIVE EXERCISE TOLERANCE
GUIDELINES
OBJECTIVE EXERCISE TOLERANCE EDUCATION
PUBLIC RELATIONS
HEALTH CARE RESEARCH

EPIDEMIOLOGY

GENDER

CENTRAL
DATABASE
AFTER-LOAD PULMONARY ARTERIOPATHY RV- HEART FAILURE MYOCARDIUM
+
REGISTER

PULMONARY ARTERIOLOPATHY
AFTER-LOAD
THERAPY

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Standardised Study Schedule

Patients with Basic data base Basic data base

Clinical examination Clinical examination
• Tetralogy of Fallot
MRI MRI
• Peripheral pulmonary
Echocardiography Echocardiography
stenosis
Objective exercise tolerance Objective exercise tolerance
• Pulmonary hypertension
Subjective exercise tolerance Subjective exercise tolerance
• Right ventricular failure
Gender-specific aspects Gender-specific aspects

Specific parameters Specific parameters

0 12
Time in months
Central data base

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Research for Health

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Survival Rate of Children with CHD

survival rate
(%)
100

0 year
1940 1950 1960 1970 1980 1990 2000

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Estimated Clinical Relevance of CHD in the next Years

Live births with CHD (0,8 % of all live births)
patients (n) Children with CHD (90 % of live births with CHD)
400000 18-year-olds with CHD (80 % of children with CHD)
Adults with CHD
350000

300000

250000

200000

150000

100000

50000

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

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Congenital Heart Defects

 Most common malformation in humans

 0,7 - 1 % of all life births

 Variety of malformations of the heart and the great
arteries

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

 Great suffering for those affected and the whole
family

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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

By Patients and Self-help Groups

Bundesverband Herzkranke Kinder e. V.

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Support of the Competence Network for Congenital
Heart Defects

By Patients and Self-help Groups

Bundesvereinigung
JEMAH e. V.

Herzkind e. V. Interessengemeinschaft
Das herzkranke Kind e. V. (IDHK)

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Consent of Parents/Patients to participate in Studies
[National Register for Congenital Heart Defects, 03/2007, n = 24,076]

no 3 %

yes 97 %

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IT-Infrastructure

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Data Protection

PID-Generator
Patientlist

Study Research
database database
Remote
data entry
Pseudonym
generating
service

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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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National Register for CHD

Executive Board 2003 - 2006

Prof. Dr. med. Günter Breithardt (Vice Chairman) DGK
Prof. Dr. med. Sabine Däbritz DGTHG
Dr. med. Fokko de Haan DGK/BNK
Prof. Dr. med. Dr. h.c. mult. Roland Hetzer DGTHG
Prof. Dr. med. Marie-Christin Seghaye DGPK
Dr. med. Karl Robert Schirmer DGPK/ANKK
Prof. Dr. med. Achim A. Schmaltz (Chairman) DGPK

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National Register for CHD

Executive Board 2007 - 2009

Prof. Dr. med. Günter Breithardt (Chairman) DGK
Prof. Dr. med. Sabine Däbritz DGTHG
Dr. med. Fokko de Haan DGK/BNK
Prof. Dr. med. Roland Hetzer (Vice Chairman) DGTHG
Prof. Dr. med. Deniz Kececioglu DGPK
Dr. med. Karl Robert Schirmer DGPK/ANKK
Prof. Dr. med. Achim A. Schmaltz DGPK

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Advisory Board

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)

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National Register for CHD

Purpose according to charter

Collection of data of patient with CHD
 for epidemiological studies
 as starting base for clinical studies

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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 each
individuals's life.

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Funded Projects 2nd Period

Epidemiological projects

EP 1.0 National Register for congenital heart defects (registered association)
EP 1.1 Family-based investigation of the genetic causes
EP 1.2 Integrated Project – Heart Failure and Cardiac Repair (HeartRepair)
EP 1.3 Sense of coherence as mediator of health-related quality of life in
adolescents with congenital heart disease (CoalaH)
EP 1.4 Quality of life and social situation of adult patients (LESSIE)
EP 1.5 Living with congenital heart defects – creating patient empowerment
by new ways of communication
EP 2.0 Prevalence of congenital heart defects in newborns in Germany
(PAN)

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Funded Projects 2nd Period

Clinical Studies

HP 3.1 Therapy of the pulmonary artery hypertension with Sildenafil in Eisenmenger patients
HP 3.3 Bosentan for decrease of pulmonary artery resistance after Fontan operation
HP 4.2 Early reintervention in children after repair of tetralogy of Fallot: Prospective analysis
of „timing“ and efficacy using cardia MRI and tissue Doppler indices
HP 4.3 Multicentric prospective analysis of factors influencing the results of corrective
operation in tetralogy of Fallot
NP 4 Cardial resynchronisation therapy for treatment of patients with cardiac insufficiency
and congenital heart defects – new therapeutical approaches

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Research for People

www.kompetenznetz-ahf.de

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www.kompetenznetz-ahf.de

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