Acta Psychiatr Scand 2009: 120: 386–391  2009 John Wiley & Sons A/S

All rights reserved ACTA PSYCHIATRICA

DOI: 10.1111/j.1600-0447.2009.01474.x SCANDINAVICA

Clinical overview
The use of population based registers in
psychiatric research
Allebeck P. The use of population based registers in psychiatric research. P. Allebeck
Department of Public Health Sciences, Karolinska
Objective: Much of the knowledge we now take for granted regarding Institutet, Stockholm, Sweden
major mental disorders such as schizophrenia, suicide and other
disorders, would not exist without the use of population based
registers. The use of population based registers in psychiatric
epidemiology have enabled analyses of associations that otherwise
would not have been possible to address.
Method: The use of registers in psychiatric research is described,
exemplified, and discussed.
Results: Methodological and validity aspects depend to a large part on
the type of register being considered. A classification is proposed of
different types of registers, each one implying specific methodological
issues. These can be addressed according to the dimensions coverage,
attrition, representativity and validity. Specific methodological
consideration has still to be taken in relation to each specific research
question. Thus, special validity studies usually need to be performed Key words: epidemiology; register research;
when embarking on studies using population based registers. population databases
Conclusion: With increasing burden of disease due to mental disorders
Peter Allebeck, Department of Public Health Sciences,
worldwide, knowledge of the epidemiology of these disorders are of
Karolinska Institutet, Stockholm, Sweden.
increasing interest. The Nordic countries have a strong history in this field E-mail: peter.allebeck@ki.se
of research, of great interest to the rest of the world. Universities and
research funding agencies should recognize this valuable source of
research capacity, and support fruitful continuation of a strong tradition. Invited paper

Clinical recommendations
• For follow-up studies on patients in care and analytic studies the Nordic population based registers
provide an important tool.
• Choice of registers to be used and methods of analyses have to be thought out carefully, and
limitations in the different data sets used must be considered.

Additional comments
• Since validity of diagnoses differ between countries and settings and types of disorders, care should
be taken in comparing data from different sources.
• Validation studies need to be performed depending on the aim of the study.
• For many disorders, a large and increasing part of the population is treated only in outpatient care,
and therefore not included in inpatient care registers.

generation were the large population based surveys

Introduction
Dohrenwend has in several classical texts described
what he calls three generations of psychiatric
epidemiology (1). The first generation of studies
were performed before the second world war and
were based mainly on second hand information;
medical records, key informants, etc. The second
such as the Midtown Manhattan and Stirling
County studies. The Swedish Lundby study and
StrömgrenÕs Samsoe study belong to this category.
In the third generation of epidemiological studies,
efforts were made to develop diagnostic instru-
ments and measurement scales in order to improve
validity and reliability of assessments. The United

386
 The use of population based registers in psychiatric research
States based ECA (Epidemiological Catchment
Area) and National Comorbidity Survey belong to
this category (2, 3). With this wave of studies,
psychiatry has in fact been in the forefront in
developing diagnostic criteria and assessment
scales, in order to avoid the critique of being a
soft science without objective criteria to rely on.
This in spite of the fact that the diagnosis of a
musculoskeletal disorder seldom is more straight-
forward than the diagnosis of a mental disorder.
It would be appropriate to place registers using
population based registers in a fourth generation
category of epidemiological studies. These have
opened up possibilities that none of the previous
types of studies have enabled. Many of the
association we now take for granted would not
have been without the use of population based
registers: The high mortality in schizophrenia, and
not only from suicides; the role of urbanity as risk
factor for schizophrenia; the role of obstetric
complications as risk factors for schizophrenia, to
give some examples.
While epidemiological studies and health ser-
vices research are the most common type of studies
in which population based registers are used,
clinical research, research in treatment course,
and episodes of care are other important applica-
tions (4, 5).
Aims of the study
In this study, we will focus on the use of registers
for epidemiological research and discuss firstly, the
advantages of and reasons for using population
based registers in psychiatric research, and sec-
ondly different types of registers typically used, and
the methodological aspects intrinsic in different
types of registers. Examples will be given with
focus on experiences from the Nordic countries.
Material and methods
The use of registers in psychiatric research is
described and discussed based on illustrative
examples from the literature.
Results
There are certain advantages in using population
based registers, e.g. large number of subjects, number
of variables, and possibilities for record linkage.
Number of subjects
One problem in psychiatric research is that many
diseases of interest have low incidence but high
prevalence due to its chronic course. Thus, while
schizophrenia is considered a common disease,
with a life time prevalence of around 7 ⁄ 1000, the
incidence is around 15 ⁄ 100 000 (6), and thus the
sample size required to assess even an important,
say two-fold increased risk, requires populations of
tens to hundreds of thousand persons, depending
on the prevalence of the potential risk factor.
Interestingly the span of incidence of schizophrenia
shown by McGrath et al. (6), around 7 ⁄ 10 000 to
40 ⁄ 10 000, is very similar to the span of suicide
rates in different countries (7), another common
outcome in psychiatric research.
Thus in order to assess the effect of potential risk
factors such as cannabis use or obstetric compli-
cations on the incidence of schizophrenia, it is clear
that population based registers are necessary to
obtain sufficient power for adequate analyses. The
same applies to suicide according to the figures
above.
Number of variables
It is not uncommon to use many variables in
psychiatric research, in particular many clinical
studies use a large number of psychological scales
measuring various types of outcomes. But the
characteristics of many population based registries,
and the possibility of combining registers, enable
analyses of associations that would otherwise not
be possible to address for example, in the research
on obstetric complications and schizophrenia, it
has been important to look at a number of clinical
variables that may be of importance for the
association, such as birth weight, asphyxia, fetal
distress, head circumference, but also to control for
socio-demographic conditions and motherÕs psy-
chiatric history (8) This is possible using care
registers comprising comprehensive clinical data
and linking to census data. Recently, interest has
grown in maternal exposure to stress and adverse
life events as risk factors for schizophrenia in the
offspring. Thus variables have been included cov-
ering demographic data and health outcomes of
close relatives, and additional variables have thus
been obtained from relatives using record linkages
(9).
Another example is the research on social
adversity as risk factor for schizophrenia. Studies
have mostly been based on a single measure of
social background such as fatherÕs income. Fur-
thermore, confounding by psychotic history in
parents, migrant status and urbanicity had been
poorly controlled for. Wicks et al. (10) used a
number of indicators of social adversity and were
able to control for confounders such as migrant
387
Allebeck
status, urbanicity and parental psychosis, and
could confirm an independent association between
social adversity in childhood and development of
schizophrenia later in life.
Record linkages
Several of the examples mentioned above require
record linkages. The availability of the person
number in the Nordic countries provides an
excellent person identifier enabling record linkages,
but many other countries have social insurance
numbers or other person identifiers. Record link-
ages enable capture of exposure data from one
source and outcome data from another source, as
opposed to e.g. health care data where both
exposure (including basic demographic data) and
outcome are found in the same type or registers.
These have enabled linkages of different types of
data sets, such as the conscription surveys in
Sweden, and Israel with health care registers, social
insurance registers with health care registers, etc.
The possibility of linking different types of
health registers with each other as well as with
social and economic data, will probably increase in
many countries, since insurance systems increas-
ingly need to monitor and follow-up health care
procedures performed by different providers as
well as socio-economic information on their cli-
ents. Major insurance companies in the United
States also have huge databases covering informa-
tion on many millions of insured persons. How-
ever, the Northern European system with person
numbers will still be unique in that they i) cover
information on the total population within a
geographic or administrative area, and not only
insured patients and ii) the person identifier is used
not only for insurance and health care purposes
but also for other purposes enabling linkages of the
type mentioned above.
Types of registers used. The characteristics and
quality of different data bases are to a large extent
dependent of the purposes for which the database
was created. We will give examples from main
types of registers used in psychiatric research and
discuss methodological issues in relation to differ-
ent types of registers.
Research purposes
There are plenty of examples from many countries
of surveys or cohorts used in psychiatric research,
although they may or may not originally have been
set up specifically for mental health research. As
they are based on originally collected data using
388
interviews, questionnaires, and sometimes labora-
tory tests, resource constraints form a natural limit
to the possibilities of collecting large samples. Two
phase sampling are often used when clinical
interviews are to be performed, but with a certain
drop out at each stage, population representativity
may be hampered. While the already mentioned
studies from the United States, the ECA and the
National Comorbidity Surveys, are most impres-
sive in their design, their size and scope of data
included, they can to a very low extent be used for
record linkages due to the lack of general person
identifiers in the United States. These surveys, as
well as the World Mental Health Survey (11), are
also unique examples of data bases that have
provided enormous amounts of information on the
epidemiology of mental disorders in many coun-
tries of the world, as well as diagnostic aspects and
comorbidity.
Compared with the above-mentioned US origi-
nated research surveys, the classical Nordic psy-
chiatric epidemiological studies such as the Samsoe
and Lundby studies established in 1957 and 1947,
respectively, have had small samples, thus not
enabling studies on the epidemiology of schizo-
phrenia or suicide per se, although analytic studies
on suicide and studies of depression and other
common mental disorders over time have been
performed (12–14). Furthermore, they have played
a major role in setting the agenda for psychiatric
epidemiology and social psychiatry.
Many longitudinal studies in psychiatric epide-
miology are based on research databases not
originally set up for psychiatric research. From
the Nordic countries one could mention the Nor-
vegian HUNT and HUSK cohorts set up for
multidisciplinary health research, that have been
extensively used also for mental health research
(15, 16). In Gothenburg a number of research
databases have been existing for almost 50 years,
and they have been supplemented continuously
with new data. Thus the cohort on womenÕs health
and the cohort of elderly (H70) have been fruitfully
used for a variety of psychiatric outcomes (17, 18).
As illustrated in Table 1, the studies are by
definition based on selected study populations,
although often well designed and carefully selected.
Thus, they are often designed to well represent
a defined population. The participation rate is
Table 1. Characteristics of research data bases
Coverage Selected study population
Attrition Sometimes considerable
Representativity Usually good
Validity Usually excellent
 The use of population based registers in psychiatric research
sometimes limited, such as in the Stockholm PART
study, and attrition over time may be considerable
(19). Training of interviewers and application of
standardized instruments generally insure high
quality of data.
Health care registers
The Danish psychiatric case register is one of the
best examples of how a national database on
persons in care can be used fruitfully for epidemi-
ological research, and is in this sense a good
heritage of Strömgrens introduction of psychiatric
epidemiology on an island not far from where the
register now is based. Among the first set of studies
were a number of important analyses of incidence
and other aspects of schizophrenia (20, 21), and
subsequently, a series of important studies have
been made on urbanicity and schizophrenia, mor-
tality in mental disorders and suicide risk, to
mention a few examples (22–24). In addition to
using the case registers as such, perhaps with
addition of census data or mortality records, many
examples can be found on how the case registers
have been used to identify outcomes when expo-
sure data have been retrieved from other sources,
such as for example in the Swedish conscripts
survey or the Danish twin register (25, 26).
Other health related databases
We will briefly mention the central registers used
for monitoring and follow-up. They have basically
similar characteristics regarding quality aspects,
listed in Table 2.
Cause of death registers. These have been central in
all types of suicide research as well as studies on
mortality in patients with mental illness. While all
developed countries have careful recording of all
deaths, not all countries have comprehensive
cause-of-death registers available to researchers.
Again, many northern European countries have
the advantage of being able to link health care or
research databases to cause of death registers. In
addition to the above mentioned purposes, knowl-
edge about vital status is necessary for follow-up of
patients.
Table 2. Characteristics of cause-of-death registers and other monitoring registers
Coverage Usually only inpatient care is covered, a strong
limitation for many disorders
Attrition If persons move to outpatient care or migrate
Representativity If only hospitalized cases, more severe cases
are over represented
Validity Diagnostic validity needs to be assessed
Cancer registers. These have sometimes been used
to address the association between cancer and
psychiatric disorders, as well as suicide risk in
cancer patients.
Birth records. As mentioned above, these have
been central in the research on obstetric risk
factors and psychosis.
Other registers
Only two types of registers that have been in focus
in recent years, school registers, and social insur-
ance registers.
School registers. With the increased interest in life
course aspects of major psychiatric disorders,
information on states and events early in life has
become important. Early cognitive function and
school performance are factors shown to be of
importance for later mental illness. The availability
of school registers in Finland and Sweden have
identified poor school performance as a risk factor
for later development of schizophrenia (27, 28).
Regarding suicide, the association seems to be more
complex, in that good school performance has been
shown to be related to lower suicide risk, although
among patients with psychosis the inverse associ-
ation was found (29). Similar findings have been
obtained from a Swedish cohort of school children
on which data from cognitive tests were available
(30), strengthening the hypothesis that measures of
school performance and cognitive function are
strongly linked. While coverage overall is good
regarding school registers, validity of test results
and school marks may vary between regions in the
country and over time. As the main issue is
comparability between exposure categories (e.g.
subjects performing well and subjects performing
poorly), and longitudinal design to exclude reverse
causation, the studies mentioned are sufficiently
unbiased to assure validity of findings.
Social insurance registers. Sickness absence and
disability due to mental disorders have increased
considerably in several northern European coun-
tries in recent years, and research in the area has
been promoted. However, social insurance regula-
tions vary between countries and over time, and
data are therefore difficult to interpret. Only a few
countries have comprehensive registers on sickness
absence and disability pension, and even if they are
available, diagnoses are questionable, since mental
disorders and especially substance abuse may be
underreported in physiciansÕ certificates. Hensing
and Wahlström (31) have summarized findings and
389
Allebeck
also discussed methodological aspects. Thus, anal-
yses of occurrence and trends in sickness absence
or disability pension due to mental disorders are
difficult when using only social insurance registers.
However, if a defined cohort with background data
is available, a social insurance register can be
validly used for comparison of incidence of sick-
ness absence or disability pension between various
groups in the cohort. This has been done in several
studies from the Whitehall cohort, as well as in
several cohorts from the Nordic countries (32–34).
Discussion
Issues of validity are central in the use of case
registers (Table 3). While data on admission and
discharge usually are exact, diagnoses are not
always correct. Mental health diagnoses need to be
validated, and this was done in the Danish case
register regarding schizophrenia (35). Also the
Swedish case register have been subject to some
validation studies (36), but issues of validity and
generalizability needs to be addressed for each
specific study purpose. A more serious problem may
be the fact that many case registers are based on
inpatients only, and psychiatric patients are increas-
ingly being treated in outpatient care. Patients
identified in a case register are hardly ever repre-
sentative of all cases with a disorder, also in somatic
care. But since the issue of concern in epidemiology
and health services research generally is compara-
bility rather than total coverage of the population,
again, issues of validity and generalizability needs to
be addressed for each specific type of study.
Much of the knowledge we now take for granted
regarding major mental disorders, schizophrenia,
suicide and other disorders, would not exist with-
out the use of population based registers. Thus
knowledge of background factors, occurrence of
and outcome of major mental disorders have been
possible through longitudinal studies and record
linkages of large population samples.
Methodological and validity aspects are to a large
extent dependent on the type of registers used. We
have found a classification into different types of
registers useful in a discussion of methodological
aspects. While other perspectives could be added,
Table 3. Characteristics of psychiatric case registers
Coverage All births and deaths are recorded to virtually 100%.
Cancer also good coverage, but may depend on
screening intensity
Attrition Virtually none
Representativity Represent all persons in the country or region covered.
Validity In general good but causes of death can be questioned.
Suicides in particular difficult
390
the following four have been addressed in this paper:
Coverage, attrition, representativity and validity.
These perspectives need to be addressed in the
planning and design of epidemiological studies, and
validity studies should be performed according to
the aim of the specific study being planned. Changes
in the health care system need to be monitored, and
the effect of increasing use of outpatient care should
be understood.
With increasing burden of disease due to mental
disorders worldwide, knowledge of the epidemiol-
ogy of these disorders are of increasing interest.
The Nordic countries have a strong history in this
field of research, of great interest to the rest of the
world. Universities and research funding agencies
should recognize this valuable source of research
capacity, and support fruitful continuation of a
strong tradition.
Declaration of interest
None.
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