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Title
Research for People
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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
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www.kompetenznetz-ahf.de
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www.kompetenznetz-ahf.de