1. How to find datasets from your own country
Introduction to WHO HFA, EUROCISS, MONICA and AMI/ACS registers

2. Introduction
Reliable indicators for monitoring CVD and for which data are available on a comparable basis across EU countries are currently limited
Even mortality is scarcely comparable since the diagnostic criteria for coding death certificates are not standardized at international level and diagnostic information is not based on uniform criteria

3. Common data sources in Europe
WHO-mortality (Health For All, HFA)
WHO-MONICA
EUROCISS inventory of population-based registers
Except for the MONICA, data presented are extremely variable

4. WHO-Time trends in IHD mortality in 1970–2000 men and women aged 45–74 years
WE, Western Europe : Austria, Belgium, Denmark, England and Wales, Finland, France, Germany, Greece, Ireland, Italy, The Netherlands, Norway, Portugal, Scotland, Spain, Switzerland, Sweden
ELL. Estonia, Lithuania, Latvia
Kesteloot, Sans, Kromhout. European Heart Journal (2006) 27, 107–113

5. WHO-Time trends in stroke mortality in 1970–2000 men and women aged 45–74 years
WE, Western Europe : Austria, Belgium, Denmark, England and Wales, Finland, France, Germany, Greece, Ireland, Italy, The Netherlands, Norway, Portugal, Scotland, Spain, Switzerland, Sweden
ELL. Estonia, Lithuania, Latvia
Kesteloot, Sans, Kromhout. European Heart Journal (2006) 27, 107–113

6. Mortality data available
WHO HFA, EUROSTAT
Age: 0-64, 65+, 25-64,
0-14, 15-29, 30-44, 45-59, 60-74, 75+;
from WHO-HFA
0-84 by 5-year age groups, 85+, 0-64
from EUROSTAT
for IHD and STROKE

7. Participating countries
AUSTRIA
M. Kornitzer
DENMARK
M. Madsen
FINLAND
V. Salomaa
france
S. Paterniti
GERMANY
A. Doring
ITALY
S. Giampaoli, L. Palmieri, S. Panico,
F. Seccareccia, D. Vanuzzo
ICELAND
V. Gudnason
GREECE
A. Trichopoulou
M. Verschuren
NORWAY
POLAND
A. Pajak
PORTUGAL
E. Rocha
SPAIN
S. Sans
SWEDEN
N. Hammar UK
P. Primatesta
EUROPEAN HEART NETWORK
K. Steinbach
BELGIUM M
Participating countries
AUSTRIA
K. Steinbach – Austrian Hearth Foundation, Wien
BELGIUM
M. Kornitzer – School of Public Health, Bruxelles
CZECH REPUBLIC
J. Holub – Institute of Health Information and Statistics, Praha
DENMARK
M. Madsen – National Institute of Public Health, Copenhagen
FINLAND
V. Salomaa – National Public Health Institute, Helsinki
FRANCE
J. Bloch, C. Peretti – Institut de Veille Sanitarie, Saint Maurice
GERMANY
A. Doering – Insitute für Epidemiologie GSF, Neuherberg
HUNGARY
R. Adany – School of Public Health, Debrecen
ITALY (COORDINATOR)
S. Giampaoli, L. Palmieri, P. Ciccarelli, S. Panico, D. Vanuzzo, Rome
ICELAND
V. Gudnason – Iceland Heart Association, Kopavogur
GREECE
A. Trichopoulou – School of Medicine, Athens
The NETHERLANDS
M. Verschuren – National Institute of Public Health and E. Bilthoven
NORWAY
S. Graff-Iversen – Norvegian Insitute of Public Health, Oslo
POLAND
A. Pajak – Institut of Public Health, Krakow
PORTUGAL
E. Rocha – Insituto de medicina Preventiva, Lisbon
SPAIN
S. Sans – Institut d'Estudis de la Salut, Barcelona
SWEDEN
N. Hammar – Karolinska Institute, Stockholm UK
P. Primatesta – Univ. College London Medical School, London
EUROPEAN HEART NETWORK
S. Allender – University of Oxford, Oxford
the NETHERLANDS
S. Graff-Iversen
P. Primatesta

8. The map….

9. To prioritise cardiovascular disease of major interest in EU countries
Main objectives
To prioritise cardiovascular disease of major interest in EU countries
To provide a list of specific indicators and sources of information for monitoring CVD
To prepare the Manual of Operations for the implementation of population-based registers of acute myocardial infarction/acute coronary syndrome, stroke and of CVD surveys

10. EUROCISS Recommendations for mortality indicators
AMI: ICD10 codes I20-I21 (ICD9: 410)
IHD: ICD10 codes I20-I25 (ICD9: )
CVA : ICD10 codes I60-I69 (ICD9: )
Ischaemic STROKE : ICD10 code I64 (ICD9: 434)
Haemorragic STROKE :
(Intracerebral) ICD10 codes I61, I62 (ICD9: 431, 432)
(Subarachnoid) ICD10 code I60 (ICD9: 430)
Age: 35-44, 45-54, 55-64, and 75-84
Indicators should be standardised by age and gender using the European standard population

15. Trend in coronary events

18. Trend in case fatality

19. MONICA Project Limits: Coverage (only some areas of country)
Age range (35-64)
Cost
10 years out of date
Advantages:
Comparable and reliable data
Hot-cold pursuit to identify suspected events in all countries
All events validated during registration period

20. Tools for monitoring AMI/ACS Type of registers/health surveys
Data sources
Data collection
Indicators
Registers based on routine administrative data
Mortality registers
Hospital registers
Drug-dispensing registers
Hospital discharge and mortality data unlinked with or without validation
Mortality
Hospitalisation
Length of stay
Extraction of hospital discharge and mortality data with record linkage and with or without validation of a sample
Attack rate
Case fatality rate
Specific
AMI/ACS registers
HDR
GP Records
Other sources
Collection of data including fatal and non fatal cases in and outside hospital by hot/cold pursuit
Incidence rate
Prevalence
Treatment
Years of life lived with disability (YLDS)
Estimate of long-term care needs
Surveys
Health interview and/or health examination
Questionnaire and medical examination of random population samples
Risk factors

21. Registers based on administrative
data-bases
Identification of events: record linkage between mortality and hospital discharge records
Coverage: the whole country area, all age groups
Data collection: large number of events
Resource consuming: economical
Objectives: to plan health services and health care expenditure; to provide internationally comparable data on mortality, causes of death and hospital admissions
Indicators: attack rate, (incidence), treatment

22. NATIONAL AMI/ACS Population-based Registers in Europe: From Administrative Databases
Country
Age range
Population (x 1000)
ICD version
Mortality
ICD codes(*)
HDR
Validation
Denmark
all
5,411
VIII,X
, 798, 799
410
MONICA
Finland
5,200 X
, 428,798, 799
, 428
MONICA, ESC/ACC
Iceland
25-74
170
IX, X
, 428, 798, 799
, 414
ECG, enzymes, symptoms, MONICA, autopsy
Sweden
9,011
(*) all codes are presented in the ICD-9 revision to facilitate the comparison

23. Registers based on specific data collection
Identification of events: hot/cold pursuit; validation of each event applying standardized diagnostic criteria
Coverage: may not be representative of the whole country; covering selected age-ranges, implemented for a limited period of time, in a defined population of reasonable size
Resource consuming: expensive
Indicators: attack rate, incidence, prevalence, case fatality, treatment, years of life lived with disability (YLDS), estimate of long-term care needs

24. Population-based specific AMI Registers: based on specific data collection
Country
Years
Age range
Population
x 1000
Accessibility
Belgium
Charleroi
Ghent
25-69
25-74 (Ghent)
100
142 (Ghent)
School of Public Health/University of Ghent
Belgium Bruges
25-74
151
Univ. of Ghent
Northern Denmark
All
494
Aarhus Univ.
Finland
35+
193
KTL
France
35-74
1,519
INSERM U780
Germany
407
GSF – KORA
Italy
3,600
Institute of Health
Norway
1,000
Health Region West
Spain
480
Institute of Health Studies
Northern Sweden
322
MONICA

25. AMI/ACS Population–based Registers in Europe: (continued) case definition
Country
ICD version
Mortality
ICD codes(*)
HDR
Linkage
Mortality / HDR
Validation
Belgium
IX, X
, 428, 799
, 428
PTCA, CABG
Name, date of birth
ECG, enzymes, symptoms, MONICA
Northern Denmark X
410 ID
No validation
Finland
410, 411, 428,798
410, 411
MONICA, ESC/ACC
France
, 798, 799
MONICA
Germany
, 428,799
Italy IX
, 798,799
Norway
Troponine, CKMB levels
Spain
, 428, 798, 799, others
Northern Sweden – MONICA
(*) all codes are presented in the ICD-9 revision to facilitate the comparison

26. AMI/ACS Population-based Registers Objectives
monitoring disease occurrence (attack and incidence rates)
understanding differences between genders, age groups, social classes, ethnic groups, etc.
identifying vulnerable groups
monitoring in- and out-of-hospital case fatality
monitoring the consequences of disease in terms of treatment and rehabilitation
tracing the utilization and impact of new diagnostic tools and treatments

27. AMI/ACS Population-based Registers
Manuals of Operations
Quality control
Quality control is extremely important for a valid monitoring and comparison and depends:
completeness of cases
completeness of information

28. AMI/ACS Population-based Registers
Manuals of Operations
Internal validity
Validation evaluates the sensitivity, specificity and predictive value of the registered diagnosis compared to a golden standard
To validate coronary events, the New Criteria of the Joint ESC/ACC or the MONICA diagnostic criteria may be applied as golden standard

29. AMI/ACS Population-based Registers
Manuals of Operations
External validity
All events occurring in the target population must be registered
It is important to know how representative is the area for the whole country according to:
IHD mortality rate
distribution of risk factors (socioeconomic status and health behaviour)
distribution of health service (specialized hospitals, GPs)

30. AMI/ACS Population-based Registers Validation provides the means to:
Manuals of Operations
Validation provides the means to:
take into account bias from diagnostic practices and changes in coding systems
trace the impact of new diagnostic tools and re-definition of events
ensure data comparability within the register (i.e. different sub-populations, different time points, etc)
ensure data comparability with other registers within and between countries

31. Participating countries
AUSTRIA
M. Kornitzer
DENMARK
M. Madsen
FINLAND
V. Salomaa
france
S. Paterniti
GERMANY
A. Doring
ITALY
S. Giampaoli, L. Palmieri, S. Panico,
F. Seccareccia, D. Vanuzzo
ICELAND
V. Gudnason
GREECE
A. Trichopoulou
M. Verschuren
NORWAY
POLAND
A. Pajak
PORTUGAL
E. Rocha
SPAIN
S. Sans
SWEDEN
N. Hammar UK
P. Primatesta
EUROPEAN HEART NETWORK
K. Steinbach
BELGIUM M
Participating countries
AUSTRIA
K. Steinbach – Austrian Hearth Foundation, Wien
BELGIUM
M. Kornitzer – School of Public Health, Bruxelles
CZECH REPUBLIC
J. Holub – Institute of Health Information and Statistics, Praha
DENMARK
M. Madsen – National Institute of Public Health, Copenhagen
FINLAND
V. Salomaa – National Public Health Institute, Helsinki
FRANCE
J. Bloch, C. Peretti – Institut de Veille Sanitarie, Saint Maurice
GERMANY
A. Doering – Insitute für Epidemiologie GSF, Neuherberg
HUNGARY
R. Adany – School of Public Health, Debrecen
ITALY (COORDINATOR)
S. Giampaoli, L. Palmieri, P. Ciccarelli, S. Panico, D. Vanuzzo, Rome
ICELAND
V. Gudnason – Iceland Heart Association, Kopavogur
GREECE
A. Trichopoulou – School of Medicine, Athens
The NETHERLANDS
M. Verschuren – National Institute of Public Health and E. Bilthoven
NORWAY
S. Graff-Iversen – Norvegian Insitute of Public Health, Oslo
POLAND
A. Pajak – Institut of Public Health, Krakow
PORTUGAL
E. Rocha – Insituto de medicina Preventiva, Lisbon
SPAIN
S. Sans – Institut d'Estudis de la Salut, Barcelona
SWEDEN
N. Hammar – Karolinska Institute, Stockholm UK
P. Primatesta – Univ. College London Medical School, London
EUROPEAN HEART NETWORK
S. Allender – University of Oxford, Oxford
the NETHERLANDS
S. Graff-Iversen
P. Primatesta

32. Conclusions
CVD is responsible of a great number of hospitalisation and deaths
A surveillance system based on the collection of comparable and valid data is essential for evaluating the burden of CVD, time trends and geographical distribution and for planning and implementing appropriate preventive actions.
Population-based registers represent the best data source for surveillance of acute coronary events as they include morbidity and in- and out-of-hospital mortality
Unfortunately, today they are still very rare in Europe and cover only a small portion of the European population, mainly in the Nordic countries
Attack rate for acute events from population-based registers and prevalence of chronic conditions from CVD surveys are the indicators recommended in the ECHIM Project (European Community Health Indicators and Monitoring)

33. Useful websites for data sources
Acknowledgements
Prof Simona Giampaoli for the use of these slides – Presented at EUROPREVENT Madrid 2007.
Useful websites for data sources
EUROCISS project
WHO Monica project
European Health for All (HFA) database

37. Homework
Find data sources for CHD mortality and morbidity for your own country for the next event in Liverpool.