Scandinavian Registers in Arthritis and Normal Populations

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Scandinavian Registers in Arthritis and Normal
Populations

• Tuulikki Sokka, MD, PhD
• Jyväskylä Central Hospital, Jyväskylä, Finland

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Scandinavian Countries
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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.

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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 t
hat 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 21-3
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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 dat
a security, data protection and privacy.
Mr. Hannu Luntiala, Director General, Population
Register Centre, Finland at Conference REGNO 2006
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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
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The Population Registry

• Maintains a file on all citizens and foreigners
  living permanently in the country.
  
• The systems 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
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The Cancer register

• were begun in most Scandinavian countries during
  the 1950s, and reporting became obligatory
  during the 1960s
  
• 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
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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 1900s in Scandinavian
  countries.
  

Sokka. Rheum Dis Clin N Am 2004
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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
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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 governments administrative
  registers.
  

Sokka. Rheum Dis Clin N Am 2004
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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 nation-wide who have
  been diagnosed with chronic conditions.

Sokka. Rheum Dis Clin N Am 2004
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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
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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.
  

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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
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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

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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
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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
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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 directly from the system,
  not from the citizens

Timo Salovaara, vrk.fi
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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
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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.

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Privacy and the registers - PHI?

• The historical background and the societys 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
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Examples of studies that have used national
databases in rheumatology research
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RHEUMATOLOGY RESEARCH AND THE NATIONAL DATABASES
Mortality in patients with RA Incidence of rheu
matic diseases Risk of cancer in patients with rh
eumatic diseases Health care costs of RA Work di
sability and musculoskeletal conditions
Familial clustering of musculoskeletal conditions
Sokka. Rheum Dis Clin N Am 2004
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Mortality in patients with RAFinland

• 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

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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

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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
  

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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

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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 31691-696.
• 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
  Mar54(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

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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 first-degree relatives. Arthritis
Rheum 2003 48(4)963-970.
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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

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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.
  

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J SørensenHealth care costs attributable to the
treatment of rheumatoid arthritis.
Health Care Costs Denmark

• Scand J Rheumatol 200433399-404

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• 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
  

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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

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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

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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
  

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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 rh
eumatoid arthritis in Iceland.Arthritis Rheum.
2001 Oct44(10)2247-54.
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An example of a pedigree algorithm linking 36
rheumatoid arthritis patients to a single founder
born in 1755.
Arthritis Rheum 2001
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• 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.

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Scandinavian Population-Based Registers
Conclusions

• Nationwide population-based longitudinal
  databases provide excellent resources for
  epidemiology and medical research in Scandinavia.

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Scandinavian Registers in Arthritis
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Sweden
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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.

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Acknowledgments Mirja Rekola, librarian, at Rhe
umatism 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.