Transcript Scandinavian Registers: What do they tell us?

Scandinavian Registers in
Arthritis and Normal Populations
Tuulikki Sokka, MD, PhD
Jyväskylä Central Hospital,
Jyväskylä, Finland
Scandinavian Countries
Population GNP per capita Life
mil.
mil. USD/ 2004 expectancy
M/F
Denmark
Finland
Iceland
Norway
Sweden
5.3
5.2
44.8
35.7
75.2/ 79.9
75.3/ 82.3
0.3
4.5
8.9
24.2
41.8
54.6
38.5
78.1/ 82.2
77.5/ 82.3
78.4/ 82.7
Background
Population registers in Scandinavia date back to
the 16th century in the former Sweden-Finland.
In the 17th century a law was passed that all
births, marriages, and deaths must be recorded.
Genealogic information has been collected by
Icelanders through the nations’ history of 11
centuries.
Why population registers?
The initial reason for population registers in
Scandinavia was to collect taxes more effectively –
as was the case in the most well-known census:
“In those days Caesar Augustus issued a decree
that a census should be taken of the entire Roman
world. This was the first census that took place
while Quirinius was governor of Syria. And
everyone went to his own town to register”
Luke 2:1-3
“The base registers are the corner stones of
INFORMATION SOCIETY. To build society where
services are available in digital or electronic form
means that information concerning people, buildings
and apartments, real estates and companies must
be available and must be reliable.
On the other hand, the citizens must rely on data
security, data protection and privacy.”
Mr. Hannu Luntiala, Director General, Population
Register Centre, Finland at Conference REGNO
2006
Nation-wide longitudinal databases in
Scandinavia; registers on people
The Population Registry
The Cancer Registry
The Cause of Death Registry
The Hospital Inpatient Registry
The Medication Reimbursement Registry
The Multi-Generation Registry
The Icelandic Genealogy Database
Serum banks
linkable to each other by the personal
identification code
Sokka. Rheum Dis Clin N Am 2004
The Population Registry
Maintains a file on all citizens and foreigners
living permanently in the country.
The system’s basic unit is a person, whose
personal identifiers are a personal identification
code, date of birth, and first and last name.
Characteristics of each individual that are
recorded include gender, native language,
citizenship, current and former address, marital
status, membership of a religious group, spouse,
children, parents.
The date of death is recorded.
Sokka. Rheum Dis Clin N Am 2004
The Cancer register
were begun in most Scandinavian
countries during the 1950’s, and reporting
became obligatory during the 1960’s
collects data on all cancer cases in the
population
The informants who submit data on cancer
cases include all hospitals, physicians,
pathological, cytological and hematological
laboratories and dentists.
Sokka. Rheum Dis Clin N Am 2004
The Cause of Death Registry
The Cause of Death Registry contains
information on dates and causes of all
deaths according to the ICD.
Official statistics on the death rates are
available since the early 1900’s in
Scandinavian countries.
Sokka. Rheum Dis Clin N Am 2004
The Hospital Inpatient Registry
Contains information on inpatient care
according to the personal identification
code
For every hospital discharge, information
on diagnoses and surgical procedures are
recorded according to the ICD.
The hospital code, and the date of
admission and discharge are recorded.
Sokka. Rheum Dis Clin N Am 2004
Registers concerning benefits and
reimbursements in the case of diseases
The government is responsible for sickness
allowances and national pensions.
If a person becomes unable to do his or her
regular or similar job for an illness, he or she is
entitled to a sickness allowance/disability
pension as compensation for lost income.
Data are stored on government’s administrative
registers.
Sokka. Rheum Dis Clin N Am 2004
The Medication Reimbursement
Registry
In Finland, Social Insurance Institution
provides reimbursed drugs for certain
chronic diseases.
Included: patient ID, date of decision of
reimbursement, code of disease group
The Medication Reimbursement Registry
is a source to identify all individuals nationwide who have been diagnosed with
chronic conditions.
Sokka. Rheum Dis Clin N Am 2004
The Prescription Registry
covers all permanent residents in Finland,
comprises all purchases of prescribed
medications.
The registry includes codes of the
medications, date of action, prescribing
physicians and the personal identification
code.
Sokka. Rheum Dis Clin N Am 2004
The Multi-Generation Registry
The Multi-Generation Registry consists of
persons who have been residents in
Sweden after 1960, born 1932 or later.
This registry provides information on all
these persons and their biological parents.
Through this information it is possible to
trace all first- and second-degree relatives.
The Iceland Genealogy Database
Includes a personal identification code,
identifier of parents, gender, date of birth and
death
all presently living Icelanders (c. 270 000), and
almost all of their ancestors since 1100 years
ago
Furthermore, genotypes of >25,000 Islanders
have been studied.
Sokka. Rheum Dis Clin N Am 2004
Serum banks
NBSBCCC, The Nordic Biological
Specimen Banks for Cancer Causes and
Control
> 1.5 million samples from the
Scandinavian countries
– Free maternity programs
– Public health programs
– Population studies
Population Registers
Coverage and reliability
The quality requirements of the registered
data include extensive coverage and high
reliability.
The requirement about coverage is met
when each unit that should be registered
is entered in the register.
Reliability studies are carried out at certain
intervals to ensure reliability of the data.
Sokka. Rheum Dis Clin N Am 2004
Prescribed by law
The registers are strictly regulated by law
including
– development and control of the registration
– maintenance and delivery of information
Organizations which operate under the
supervision of the government are responsible
for the national information services concerning
processing the data to be developed and
tailored to meet the needs of the institutions and
authorities that use the data.
Sokka. Rheum Dis Clin N Am 2004
Population Register Centre
PURPOSED USES OF POPULATION
INFORMATION
(According to the Population Information Act of 1993)
• judical proceedings
• administrative decision-making
• scientific research
• national statistics
• updating of customer registers
• polls, opinion surveys and market research
• direct marketing
NB1: population information is collected and maintained for the purposes
of both public (government) services and private (business) services
NB2: the purpose is that civil authorities obtain necessary information
Timo Salovaara, vrk.fi
directly from the system, not from the citizens
The Leading Information Centre
Privacy and the Population Register
Individual has a right to forbid his/her
information to be delivered for certain
purposes such as:
– Marketing
– Address search
– Genealogy catalogs
Sokka. Rheum Dis Clin N Am 2004
Privacy and the registers - PHI?
Registers are regarded as part of the
infrastructure of the society.
Registers that contain information on individuals’
health were established to recognize public
health problems, in order to develop preventive
strategies.
The society assumes responsibility for an
individual who develops an illness, providing
access to medical care almost without cost, as
well as benefits including sick leave,
rehabilitation and a disability pension.
Privacy and the registers - PHI?
The historical background and the society’s major role of
being responsible for its members may have saved
Scandinavia from major concerns regarding the privacy
of personal health information, unlike in some other
countries where laws concerning protection of privacy
have made health information registers almost illegal.
Overall, protection and improvement of public
health appears to overcome the issue of
protection of privacy, both in legislation and in
public opinion in Scandinavia.
Law: emphasis in reliability, coverage, needs of
the users of the data vs. privacy issues
Sokka. Rheum Dis Clin N Am 2004
Examples of studies that have
used national databases in
rheumatology research
RHEUMATOLOGY RESEARCH AND THE NATIONAL
DATABASES
Mortality in patients with RA
Incidence of rheumatic diseases
Risk of cancer in patients with rheumatic diseases
Health care costs of RA
Work disability and musculoskeletal conditions
Familial clustering of musculoskeletal conditions
Sokka. Rheum Dis Clin N Am 2004
Mortality in patients with RA;
Finland
The Population Registry
-search for people who died in 1989
•Search results linked to
The Medication Reimbursement Registry
-to identify people with RA
•Search results linked to
The Cause of Death Registry
-provided causes of death
Results: Myllykangas-Luosujärvi et al:
A total of 1666 RA patients died in 1989 in
Finland
High cardiovascular mortality in women who had
RA
Accumulation of leukemia and lymphoma in
long-lasting RA
Frequent occurrence of fatal side effects from
NSAIDs
Overall shortening of life span by 3-4 years
Incidence of rheumatic diseases;
Finland
The Medication Reimbursement Registry
-search for subjects who were entitled to
reimbursed medication for rheumatic
diseases in Finland in 1975, 1980, 1985, 1990
• Data were confirmed from
reimbursement certificates and
medical records
Results: Kaipiainen-Seppänen et al:
Incidence of RA 40 in women, 23 in men
/100,000 adults, in 1995
The mean age at diagnosis of RA increased
from 50 to 58 between 1975 and 1990
Regional differences in the incidence of RA;
highest in the East, lowest in the West
Incidence of AS 6.9/100,000
Incidence of psoriatic arthritis 6.0/100,000
Risk of cancer in patients with
rheumatic diseases
Isomäki HA, Hakulinen T, Joutsenlahti U. Excess risk of
lymphomas, leukemia and myeloma in patients with
rheumatoid arthritis. J Chronic Dis 1978; 31:691-696.
Baecklund E, Iliadou A, Askling J, Ekbom A, Backlin C,
Granath F, Catrina AI, Rosenquist R, Feltelius N,
Sundstrom C, Klareskog L. Association of chronic
inflammation, not its treatment, with increased lymphoma
risk in rheumatoid arthritis. Arthritis Rheum. 2006
Mar;54(3):692-701.
Askling J, Klareskog L, Fored M, Blomqvist P, Feltelius N.
Risk for malignant lymphoma in ankylosing spondylitis. a
nationwide Swedish case-control study.
Ann Rheum Dis. 2006 Jan 13
Ekstrom K, Hjalgrim H, Brandt L,
Baecklund E, Klareskog L, Ekbom A et al.
Risk of malignant lymphomas in patients
with rheumatoid arthritis and in their firstdegree relatives.
Arthritis Rheum 2003; 48(4):963-970.
Risk of lymphomas; Sweden
The Hospital Inpatient Registry
-search for patients with RA 1964-99
Search results linked to
The Multi-Generation Registry
– search for 1st degree relatives
The obtained database linked to 5
population-based nation-wide registers
– The Cancer Registry
– The Cause of Death Registry
– The Hospital Inpatient Registry
– The Population Registry
– The Registry of Population Changes
Results, Ekstrom et al:
The obtained database included all incident
cancers, deaths, emigrations, inpatient care
for RA and other rheumatic diseases and
included 731,206 person years in patients
and 1,081,094 person years in relatives.
Patients with RA had an increased risk of
lymphoma, while the risk of lymphoma was
not increased in their 1st degree relatives.
Health Care Costs; Denmark
J Sørensen
Health care costs attributable to
the treatment of rheumatoid
arthritis.
Scand J Rheumatol
2004;33:399-404
The Population Registry
– 20% of adults in the registry in 1994 were randomly
selected
Search results linked to
The Inpatient Registry
– to identify people with RA defined, as having
inpatient care for RA in 1994-1997
The Death Registry
– to identify individuals who died in 1997
Health Services Databases
– That include all contacts that patients have with
hospitals, general practitioners and specialists
Results, Sørensen:
Patients with RA used health care services
3.2 times more than people without RA
which translates to incremental costs of 30
million EUROs per year.
RA causes the loss of 1,549 years of life
per year in Denmark
Work disability and musculoskeletal
diseases; Norway
The Population Registry
– Search for employed individuals in Norway
in 1980, ages of 20 to 53 years
Search results linked to
The National Insurance Admin Database
– to identify people who had new disability
pension during 1983-1993
Results, Holte et al.
an impact of education level and
socioeconomic status on work disability
from back pain
an association of manual work and work
disability from osteoarthritis
early occurrence of permanent work
disability in patients with RA
Familial clustering of
musculoskeletal conditions; Iceland
The Genealogy Database in Iceland
covers family relationships of most
Icelanders over the past centuries
Grant SF, Thorleifsson G, Frigge ML, Thorsteinsson J,
Gunnlaugsdottir B, Geirsson AJ, Gudmundsson M,
Vikingsson A, Erlendsson K, Valsson J, Jonsson H,
Gudbjartsson DF, Stefansson K, Gulcher JR, Steinsson K.
The inheritance of rheumatoid arthritis in Iceland.
Arthritis Rheum. 2001 Oct;44(10):2247-54.
An example of a pedigree
algorithm linking 36 rheumatoid
arthritis patients to a single
founder born in 1755.
Arthritis Rheum 2001
This epidemiologic study was conducted to investigate
familial clustering of Icelandic RA patients.
Findings were similar to the findings with human longevity
that the minimum number of founders for the patients was
significantly lower compared with the minimum number of
founders for the control sets.
Therefore, the RA patients were more related to each
other than were the matched Icelandic controls.
The results encourage the search for the genes
responsible for RA in the population.
Scandinavian Population-Based
Registers; Conclusions
Nationwide population-based longitudinal
databases provide excellent resources for
epidemiology and medical research in
Scandinavia.
Scandinavian Registers in Arthritis
Local Clinical
Databases
Denmark
Finland
Iceland
Norway
Sweden
DANBIO
Central Finland RA
Database
Oslo RA Database
Kristiansand RA db
Swedish RA
Register; TIRA,
BARFOT
National
Biologics
Registers
DANBIO
ROB-FIN
Norway Biologic
Register
ARTIS
STURE
SSATG
Sweden
A yellow house model:
A dream of a development of a uniform
database for international use, to collect
longitudinal data of Rheumatoid Arthritis,
according to standard measures in many
countries.
Acknowledgments:
Mirja Rekola, librarian, at Rheumatism Foundation Hospital in
Heinola, Finland, for her help with historical publications.
Drs. Markku Heliövaara, Kimmo Aho, Eva Baecklund, Lena
Bjornadal, Pekka Hannonen, Marjatta Leirisalo-Repo, Eero Pukkala,
Hans Rasker, Timo Salovaara, Yusuf Yazici, and Theodore Pincus
for their constructive comments for the article.