Journal of Crohn's and Colitis (2014) 8, 12741280

Available online at www.sciencedirect.com

ScienceDirect

The incidence of ulcerative colitis

(19952011) and Crohn's disease
(19952012) Based on nationwide Danish
registry data
Bente Mertz Nrgrd a,b,, Jan Nielsen a,b , Kirsten Fonager c,d ,
Jens Kjeldsen e,f , Bent Ascanius Jacobsen g , Niels Qvist h,i
a

Center for Clinical Epidemiology, Odense University Hospital, DK-5000 Odense C, Denmark
Research Unit of Clinical Epidemiology, Institute of Clinical Research, University of Southern Denmark,
DK-5000 Odense C, Denmark
c
Department of Social Medicine, Aalborg University Hospital, DK-9000 Aalborg, Denmark
d
Department of Health Science and Technology, Faculty of Medicine, Aalborg University, DK-9000 Aalborg, Denmark
e
Department of Medical Gastroenterology S, Odense University Hospital, DK-5000 Odense C, Denmark
f
Research Unit of Medical Gastroenterology, Institute of Clinical Research, University of Southern Denmark,
DK-5000 Odense C, Denmark
g
Department of Medical Gastroenterology, Aalborg University Hospital, DK-9000 Aalborg, Denmark
h
Department of Surgical Gastroenterology A, Odense University Hospital, DK-5000 Odense C, Denmark
i
Research Unit of Surgery, Institute of Clinical Research, University of Southern Denmark, DK-5000 Odense C, Denmark
b

Received 15 December 2013; received in revised form 29 January 2014; accepted 6 March 2014
KEYWORDS
Incidence;
Ulcerative colitis;
Crohn's disease;
Epidemiology

Abstract
Background and aims: The incidence of ulcerative colitis (UC) and Crohn's disease (CD) has
increased during the 20th century in North America and Western Europe. However, there are
conflicting reports whether the incidence has declined, stabilized or even continued to increase.
No nationwide Danish data on the incidence of UC and CD exist after 1992, and therefore we
studied the incidence of UC (1995 through 2011) and CD (1995 through 2012).
Methods: Based on data from the Danish National Patient Registry we identified patients
recorded with a first time diagnosis of UC or CD in the study periods. Among these patients

Abbreviations: UC, ulcerative colitis; CD, Crohn's disease; NPR, Danish National Patient Registry; ICD, International Classification of
Diseases; IRR, incidence rate ratio.
Corresponding author at: Center for Clinical Epidemiology, Odense University Hospital, Sdr. Boulevard 29, entrance 1014th, DK-5000
Odense C, Denmark. Tel.: + 45 2133 3258.
E-mail addresses: bente.noergaard@rsyd.dk (B.M. Nrgrd), jan.nielsen2@rsyd.dk (J. Nielsen), k.fonager@rn.dk (K. Fonager),
jens.kjeldsen@rsyd.dk (J. Kjeldsen), beaj@rn.dk (B.A. Jacobsen), niels.qvist@rsyd.dk (N. Qvist).

http://dx.doi.org/10.1016/j.crohns.2014.03.006
1873-9946/ 2014 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.

Incidence of inflammatory bowel disease

1275

were only included in the study as incident cases if they had at least one more discharge
diagnosis of UC/CD or at least three subsequent outpatient visits.
Results: We identified 17,500 patients with UC and 7863 patients with CD. The mean incidence
rate for UC in 19951998 was 14.4 per 100,000 per year for women and 13.8 for men, increasing
to 23.2 per 100,000 per year for women and 23.4 for men in the period of 20092011. The mean
incidence rate for CD in 19951998 was 7.8 per 100,000 per year for women and 5.6 for men,
increasing to 10.3 per 100,000 per year for women and 8.9 for men in the period of 20092012.
Conclusions: Based on nationwide Danish data from the last two decades, the incidence rates
of UC and CD have continued to increase.
2014 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.

1. Introduction
The incidence of ulcerative colitis (UC) and Crohn's disease
(CD) is subject to considerable variation between geographic
regions and time, and the incidence has increased during the
past half century in the populations of Western Europe and
North America. The highest occurrence of UC and CD is found
in Canada13 and Europe3,4, and within Europe the highest
incidence rates are found in Scandinavia518 and the United
Kingdom.1922
During the last decades it has been discussed whether the
incidence has continued to increase, has stabilized or has
even declined.2326 There are, however, some indications of
a continuing increase of the incidence of UC and CD,3,23,27,28
and a recent Swedish study showed one of the highest
incidences of UC in the world.23 No nationwide Danish data
on the incidence of UC and CD have been reported since
1992 (with reported mean incidence for UC of 13.2 per
100,000 person-years and for CD 4.6 per 100,000 personyears).12 Later reported local data from the Northern
Jutland and Copenhagen County in Denmark have indicated
a continuous increase in the incidence rates of UC and CD.7,8
UC and CD are relatively rare diseases and it is both
extremely time consuming and expensive to estimate
incidence rates based on prospective registration. Furthermore, surveillance bias may be a problem if disease
registration varies between regions and over time. For
these reasons it is valuable if existing public health registers
can provide valid surveillance data according to incidence
rates over longer time periods.
Based on nationwide data from the Danish National
Patient Registry (NPR), we aimed to examine the incidence
rates of UC and CD from 1995.

2. Materials and methods

2.1. Study population and setting
In Denmark, all citizens have free access to a tax supported
health care system throughout the study period. Its uniform
organization allowed us to use a population-based setting
using nationwide data. Since 1977, all patients are registered in the NPR when they are discharged from Danish
hospitals, and the NPR also includes all outpatient visits
since 1995.29,30 The population of Denmark was approximately 5.2 million (in 1995) increasing to 5.6 million (in

2012). The start of the period, 1 January 1995, was chosen

since this was the time for inclusion of also outpatient visits
in the NPR. The study population included new diagnosed
patients with CD in the study period of 1995 through 2012,
while the study population of UC patients included new
diagnosed patients from 1995 through 2011. Thus, data from
2012 on UC patients were excluded because of a reclassification from the World Health Organization of the International Classification of Diseases (ICD) 10 diagnostic codes for
UC (implemented in Denmark by 1, January 2012).

2.2. Identification of UC and CD patients

Information in the NPR includes patients' unique civil registration numbers, hospital, departments, dates of admission and
discharge, procedures performed and up to 20 discharge
diagnoses based on the ICD, 8th revision before 1994 and ICD,
10th revision from 1994 onward (ICD-9 has never been used in
Denmark). All patients with a valid civil registration number,
who were discharged with affirmative UC (ICD-8 codes:
563.19, 569.04; ICD-10 codes: DK51.0, DK51.1, DK51.2,
DK51.3) or affirmative CD (ICD-8 codes: 563.01; ICD-10
codes: DK50.0, DK50.1, DK50.8) from any hospital in Denmark
were identified in the NPR from 1 January 1977, and all
patients diagnosed for the first time with UC from 1995
through 2011 and CD from 1995 through 2012 were identified.
Among these patients were only included in the study as
incident cases if they also had at least one subsequent
discharge diagnosis of UC/CD or at least three subsequent
outpatient visits.

2.3. Statistical analysis

The annual incidence rates for UC and CD and for each
gender were estimated as the number of incident patients,
divided by the number of inhabitants in the middle of the
same calendar year. Information on the size of population
for each year was obtained from the National Central
Statistical Register.31 Some patients were registered with
both UC and CD in the NPR and in order to compare changes
in the incidence rate over time, patients with both diagnoses
were included under the first disease registration. The
incidence rates for UC were directly standardized to the
2011 Danish population using 15-year age groups, and
similarly the incidence rates for CD were standardized to
the 2012 population. Age-adjusted incidence rates were also
summarized within four calendar periods of time (1995

1276

B.M. Nrgrd et al.

1998, 19992003, 20042008, and 20092011/2012). The

95% confidence intervals (CI) of the estimated incidence
rates were based on the assumption of Gamma distribution.32 Furthermore, the mean incidence rates for UC and CD
were given within different age groups (b 15, 1529, 3044,
4559, 6074, N 75) and according to gender.
Poisson regression models were used to estimate the
incidence rate ratio (IRR) for the annual change in the
incidence, adjusted for gender and age (using the abovementioned age categories).
All analyses were conducted using Stata 13 software
(StataCorp LP, College Station, TX, USA).

100,000 per year for men. Table 2 shows the mean incidence
rates per year for UC within different age groups and
according to gender. In women the highest incidence rates
were found in age groups 1529 years and 3044 years, and
in men the highest incidence rates were found in the same
age groups.
The result from the Poisson regression model showed an
IRR of 1.035 (95% CI: 1.0301.040), corresponding to an
annual increase of the incidence rate of 3.5% adjusted for
age and gender. The IRR also corresponds to a doubling in
the incidence rate of UC during a period of 20.4 years (95%
CI: 17.623.2).

2.4. Ethical approvals and permissions

3.2. Incidence rate of CD

According to Danish law there are no ethical approvals of

register-based studies. The study was approved by the
Danish Data Protection Agency (J.nr. 2013-41-1670).

Fig. 2 shows the age-standardized incidence rates for CD

according to gender and each calendar year in the study
period. In 1995 the estimated rate was 6.8 (95% CI: 5.67.7) per
100,000 person years for women and 4.6 (95% CI: 3.65.3) per
100,000 person years for men. In the period of 1995 through
2012 the incidence rates increased, and in 2012 reaching 9.5
(95% CI: 8.310.7) per 100,000 person years for women and 8.8
(95% CI: 7.210.1) per 100,000 person years for men.
The mean age-adjusted incidence rate for CD in four time
periods is summarized in Table 3 and shows the increasing
incidence, reaching a mean incidence from 2009 through
2012 of 10.3 per 100,000 per year for women and 8.9 per
100,000 per year for men.
Table 4 shows the mean incidence rates per year for CD
within different age groups and according to gender. For
both men and women the highest incidence rate was found
in the age group 1529 years.
The Poisson regression model estimated an IRR of 1.024
(95% CI: 1.0191.030), corresponding to an annual increase
of the incidence rate of 2.4% adjusted for age and gender
and to a doubling in the incidence rate of CD during a period
of 28.7 years (95% CI: 22.035.5).

3. Results
There were 17,500 patients fulfilling our criteria for incident
cases of UC from 1995 through 2011, and 7863 patients of CD
from 1995 through 2012.

3.1. Incidence rate of UC

Incidence rate per 100 000 person years

Fig. 1 shows the age-standardized incidence rates for UC

according to gender and each calendar year in the study
period. In 1995 the estimated rate was 13.6 (95% CI: 11.9
14.8) per 100,000 person years for men and 13.9 (95% CI:
12.115.0) per 100,000 person years for women. In the
period from 1995 throughout 2011 the rate for both men and
women increased, and in 2011 reaching 23.5 (95% CI: 22.7
25.5) for men and 22.4 (95% CI 20.624.2) for women.
The mean age-adjusted incidence rate for UC in four time
periods is summarized in Table 1 and shows the increasing
incidence, reaching a mean incidence in the period 2009
2011 of 23.2 per 100,000 per year for women and 23.4 per
40
Female
Male

30

20

10

0
1995

1999

2003

2007

2011

Year

Figure 1 The incidence rate of ulcerative colitis, 19952011.

Incidence rates were standardized to the 2011 Danish population by 15 year age groups. Vertical lines: 95% confidence
intervals. Dotted line: men. Solid line: women.

4. Discussion
In this population based study, using nationwide Danish data
from the last two decades, we found increasing trends in the
incidence rates of UC and CD. In the study periods, the mean
incidence rate for UC increased from approximately 14 to 23
per 100,000 per year for both men and women; and the
mean incidence rate for CD increased from 7.8 to 10.3 per
100,000 per year for women and from 5.6 to 8.9 per 100,000
per year for men.
Our study has several strengths. Data were obtained
independently of the study question, and a population-based
approach is possible in Denmark due to a unique availability
of nationwide registries. Internationally, the NPR is considered to be the most comprehensive of its kind,29 and the NPR
records more than 99% of all hospital discharges for somatic
diseases.30 We thus had access to the obligatory registration
from Danish hospitals since 1977 and all outpatient visits
since 1995.29 We used the NPR to identify patients with
diagnoses of UC and CD, and the completeness and the
validity of UC and CD diagnoses in the NPR are of high
quality. The completeness of diagnoses of UC and CD has
been examined in a Danish study using the pathology system

Incidence of inflammatory bowel disease

Table 1

1277

Mean incidence rate for ulcerative colitis (UC) in four time periods, covering 1995 through 2011.
Number of UC patients
(n = 17,500)

Mean incidence rates per 100,000 person

years (95% confidence interval) a

Time period

Female

Male

Female

Male

19951998 b
19992003
20042008
20092011 c

1516
2644
2914
1828

1392
2472
2919
1815

14.4 (13.715.2)
20.2 (19.521.0)
22.3 (21.523.2)
23.2 (22.224.3)

13.8
19.7
23.0
23.4

(13.014.5)
(19.020.5)
(22.123.8)
(22.424.5)

Incidence rates were directly standardized to the 2011 population by 15 year age group. The 95% confidence intervals were based on
assumption of the Gamma distribution.
b
Includes only four calendar years.
c
Includes only three calendar years.

as a reference standard showing that of all patients with a

confirmed diagnosis of UC or CD, 94% were included in the
NPR.33 The completeness of UC and CD registration in the
NPR is most probably even higher in our study period as UC
and CD diagnoses given in outpatient visits are now also
registered. Furthermore, the overall positive predictive
values (i.e. the percentage of patients registered under
the disease code fulfilling the criteria of CD and UC) were
97% and 90% for CD and UC, respectively.33 The positive
predictive value of UC diagnoses increased further (to 94%)
when the diagnosis was given at a specialized department of
gastroenterology.33 The validity of diagnostic coding for UC
and CD in the NPR is essential. Based on the results of the
validity study of UC and CD33, and because we have been
very restrictive according to our definition of incident cases
we believe that our results are valid. First of all we have
included only affirmative codes for UC and CD, and thus
not included unspecified UC and CD codes in our study.
Furthermore, we have been very strict in our criteria of
incident cases, i.e., included patients had at least two
discharge diagnoses of UC/CD or one discharge diagnosis
with at least three subsequent outpatient visits. Therefore,
we might in fact have underestimated the true incidence
rates of UC and CD.
The figures showing the incidence trends for UC and CD
indicate a decrease in the rates at the end of the study
periods. This is most probably due to our methodological
approach. Thus, it is not surprising that the incidence curves
for UC and CD flatten out/even decrease at the end of the

Table 2 Mean incidence rates per 100,000 person years for

ulcerative colitis (UC) in different age groups.
Total number
Age
group a of UC
(years) patients
(n = 17,500)
b 15
1529
3044
4559
6074
N 75
a

Mean incidence rates per

100,000 person years
(95% confidence internal)

Female Male Female

Male

234
2442
2704
1769
1173
580

2.4 (2.12.7)
26.9 (25.828.1)
26.5 (25.527.6)
20.7 (19.821.7)
23.4 (22.224.7)
19.1 (17.420.9)

194
2144
2511
1884
1408
457

Age at first admission.

3.0
32.0
29.5
19.7
18.0
14.6

(2.63.4)
(30.733.3)
(28.430.6)
(18.820.7)
(17.019.1)
(13.415.8)

study periods since a patient with first time diagnosis at the

end of the study period has a lesser chance of fulfilling the
criteria for being included as incident case (i.e., having a
second UC/CD diagnosis in the NPR/at least three visits as
outpatients) compared to a patient with a first UC/CD
diagnosis several years ago. Thus, for 25% of UC patients, the
distance between the first and the second diagnoses in the
NPR was more than 2.3 years and the corresponding figure
for CD patients was 1.2 year. The advantage of our
methodological approach and our strict criteria for counting
a patient as an incident case is, however, that it provides
insurance on the validity of our results.
Our study also has limitations. The continuous increasing
incidence rates found in our study might be influenced by an
improved classification system and improved diagnostic
tools (e.g. capsule endoscopies). Furthermore, it is also
possible that greater awareness, either by physicians or by
patients, may result in the diagnosis of mild cases which
might have been previously unnoticed. However, the
increasing incidence of UC and CD found in this study is a
continuation of the incidence trend reported in the former
Danish study using nationwide registry data based on ICD-8
codes,12 and we do not see sudden dramatic peeks in the
incidence during the recent years reflecting a sudden
greater awareness of the disease, introduction of new
diagnostic tools, or sudden peaks according to the shift to
ICD-10 codes. One might speculate whether the increasing
incidence of UC and CD reflects an increasing tendency to
refer patients from the general practitioner to hospitals, but
it is our experience that only very few UC and CD patients
are handled in the primary health care or the very small
private sector, and for decades it has been a common
practice in Denmark to refer these patients to public
hospital units for diagnosis and treatment. A recent study
from our neighbor country, Sweden, also reported an
increasing incidence and showed that the proportion of
severe cases was similar to historical data indicating a true
increase and not attributing to better diagnostics.23 Despite
a theoretical influence of the abovementioned factors, such
as change in classification system and greater awareness, we
thus believe that our study indicates a real increase in the
incidence rates of UC and CD during the last two decades.
Former Danish studies from two specific counties have
reported incidence rates for early periods also included in this
study. In the study by Jacobsen et al.8 the incidence rates for CD
and UC at the end of their study period (2002) are in accordance
with our results. In the period of 20032005, our results on CD

B.M. Nrgrd et al.

Incidence rate per 100 000 person years

1278
20
Female
Male

Age
group a
(years)

15

10

Total number Mean incidence rates per

of CD
100,000 person years
patients
(95% confidence internal)
(N = 7863)
Female Male Female

0
1995

1999

2003

2007

2011

Year

are also in line with the study by Vind et al.7, whereas we find
higher incidence rate for UC. The study from Vind et al. was not
based on the NPR but on specific county hospital departments/
private gastroenterological surgeons where not all were
participating, and thus the results of Vind et al. might have
been underestimated. An alternative explanation is that county
specific results are not in all aspects easily compared to
nationwide data due to possible interregional differences in the
incidence of UC and CD across Denmark. The existence of such
differences in the incidence rates is recently underlined in the
paper from the ECCO-EpiCom cohort showing that the incidence
rates in 2010 varied considerably across Danish participating
centers (for UC between 7.4 and 20.1 per 100,000 and for CD
between 4.8 and 11.4 per 100,000).34
There have been reports of a stabilization of the
incidence rates in Western Europe countries and North
America.25,26 However, continuously increasing incidence
rates have also been reported 7,16,28 and a comprehensive
review from 2012 concludes that the incidence of UC and CD
is increasing with time and in different regions around the
world, indicating its emergence as a global disease.3 Our
estimated incidence rates of UC and CD correspond with
recent results from two Swedish studies from Uppsala

Table 3 Mean incidence rate for Crohn's disease (CD) in four

time periods, covering 1995 through 2012.
Number of
CD patients
(N = 7863)

Mean incidence rates per

100,000 person years
(95% confidence interval) a

Time period Female Male Female

Male

19951998 b 825
19992003 1221
20042008 1301
20092012 b 1083

5.6 (5.16.1)
7.0 (6.57.5)
8.3 (7.88.8)
8.9 (8.39.5)

573 7.8 (7.38.4)

889 9.4 (8.99.9)
1055 10.0 (9.510.6)
916 10.3 (9.711.0)

b 15
1529
3044
4559
6074
N 75
a

Figure 2 The incidence rate of Crohn's disease, 19952012.

Incidence rates were standardized to the 2012 Danish population by 15 year age groups. Vertical lines: 95% confidence
intervals. Dotted line: men. Solid line: women.

Table 4 Mean incidence rates per 100,000 person years for

Crohn's disease (CD) in different age groups.

Incidence rates were directly standardized to the 2012 population by 15 year age group. The 95% confidence intervals were
based on assumption of the Gamma distribution.
b
Includes only four calendar years.

230
1667
1072
661
552
248

Male

282 2.8 (2.53.2)

3.3 (2.93.7)
1158 20.6 (19.721.6) 13.7 (12.914.5)
820 11.1 (10.511.8) 8.2 (7.78.8)
655 7.0 (6.47.5)
6.8 (6.37.3)
393 7.9 (7.38.6)
6.1 (5.56.7)
125 5.9 (5.26.7)
4.9 (4.15.8)

Age at first admission.

County.23,35 Our study indicates that the incidence rate of

UC in Denmark is among the highest in the world and in the
same level as reported rates from Canada (19.2 per 100,000
per year), Iceland (24.3 per 100,000 per year), and Sweden
(20.0 per 100,000 per year).1,3,23,36 Also, our estimated
incidence rate of CD is among the highest in Northern Europe
and in line with reported rates from the United Kingdom
(10.6 per 100,000 per year) and Sweden (9.9 per 100,000 per
year).3,22,35 Studies of variations of the incidence of UC and
CD across demographic factors, such as age and gender, are
important because they yield clues to the etiology of
disease. Furthermore, studies of incidence provide valuable
information about the burden of illness for policy makers and
resource planners in the health care system. As UC and CD
affect individuals in the most formidable and productive
years of life the diseases result in long-term cost to the
patient, heath care system, and society.37
Many studies have been published to understand the
underlying reasons for the increased incidence of UC and CD,
but so far without great success.3,38 The emergence of UC
and CD in traditionally low prevalent regions suggests that
the development of diseases may be influenced by environmental risk factors and studies have indicated that environmental factors, not genetics (with ethnicity a proxy), are
the major driving force for the increase in incidence over
time.3,38 It is, however, still unclear what the main
component of environmental factors is. 3,27 In conclusion,
based on nationwide Danish data from the last two decades,
the incidence rates of UC and CD have continued to increase.

Conflict of interest
The authors have no conflict of interest.

Acknowledgment
The study was not supported by grants.

The specific author contributions: BMN and KF have

contributed to the conception and design, the analysis and
interpretation of data, drafting the article for intellectual
content, and finally approved the version to be published.
JN has contributed to the design, carried out the data

Incidence of inflammatory bowel disease

analyses, contributed to the interpretation of data, reviewed the article critically for intellectual content, and
finally approved the version to be published. JK, BAJ, and
NQ have contributed to the design, the interpretation of
data, revised the article critically for intellectual content,
and finally approved the version to be published.

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