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dence within each major ethnic group (2,4– confirm that the presumed large variation
type 1 diabetes among children 14 12). Large differences in incidence have in incidence exists and that a low incidence
years of age has been confirmed to be been reported in Caucasoid populations liv- in those areas is true and is not a result of
large (1–5). Among Caucasoid populations, ing in relatively close proximity and among an underestimation of the incident cases.
the incidence is higher than among Mon- those who are genetically similar. For exam- Because of the dearth of information
goloids and Negroids, although significant ple, the incidence in the Nordic countries available and limited research into the pub-
geographic differences are evident in inci- (Finland, Sweden, and Norway) is 2–4 lic health implications of type 1 diabetes,
the World Health Organization (WHO)
began the Multinational Project for Child-
From the Department of Epidemiology and Health Promotion (M.K., M.V.-K., E.M., J.T.), Diabetes and
Genetic Epidemiology Unit, National Public Health Institute, Helsinki, Finland; and the Diabetes Research
hood Diabetes (DiaMond) in 1990 (17).
Center (I.L., R.L.), University of Pittsburgh, Pittsburgh, Pennsylvania. One of the main objectives of this effort is to
Address correspondence and reprint requests to Marjatta Karvonen, PhD, Department of Epidemiology investigate and monitor the patterns in inci-
and Health Promotion, National Public Health Institute, Mannerheimintie 166, FIN-00300 Helsinki, Finland. dence of type 1 diabetes in children up to
E-mail: marjatta.karvonen@ktl.fi. the year 2000. In addition, substudies assess
Received for publication 11 April 2000 and accepted in revised form 14 June 2000.
Abbreviations: DiaMond, Diabetes Mondiale; WHO, World Health Organization. the genetic risk factors associated with the
A table elsewhere in this issue shows conventional and Système International (SI) units and conversion disease to study mortality and complica-
factors for many substances. tions in type 1 diabetes, to evaluate health
care and health economics associated with populations collaborating in the WHO Statistical methods
diabetes, and to promote training programs DiaMond incidence study is 75.1 million. Incidence rates were calculated as the inci-
in diabetes epidemiology research. The numerator comprises 19,164 children dence per calendar year and 100,000 indi-
The primary goal and the initial aim of 14 years of age diagnosed with type 1 viduals at risk. Age adjustment for the rates
the WHO DiaMond project is the surveil- diabetes from 1990 to 1994 in the WHO was done in 5-year intervals (0–4, 5–9,
lance of the incidence of type 1 diabetes DiaMond study areas. and 10–14 years) using the direct method
among children 14 years of age world- with a standard population consisting of
wide. Population-based registries are used Classification and case definition equal numbers of children in each of 3
to collect standardized data on incidence The 1985 WHO classification of diabetes subgroups. The 95% CIs were estimated
(17). The accomplishment of this goal and diagnostic criteria (18) are the basis of assuming the Poisson distribution of the
depends on close cooperation among the the minimum set of criteria for the WHO cases. The distribution of incidence rates
participating centers and a standardized DiaMond incidence study. Eligible individ- was arbitrarily divided into five groups:
approach to data collection and reporting. uals were placed on daily insulin injections 1) very low, 1/100,000 per year; 2) low,
Standardized incidence data on type 1 dia- before their 15th birthdays and were resi- 1–4.99/100,000 per year; 3) intermediate,
betes have been collected for the WHO dents in the area of registration at the time 5–9.99/100,000 per year; high, 4) 10–
DiaMond project since the year 1990. of the first insulin administration. 19.99/100,000 per year; and 5) very high,
Herein, we report the age- and sex-specific A total of 100 centers from 50 coun- 20/100,000 per year.
incidence from 1990 to 1994 worldwide. tries are participating in the WHO Dia-
Mond incidence study and are submitting RESULTS — The overall age-adjusted
RESEARCH DESIGN AND incidence data on type 1 diabetes. Of these incidence rates of type 1 diabetes varied from
METHODS centers, 25 are taking part in the WHO 0.1/100,000 per year in Zunyi, China, and
DiaMond project through the EURODIAB Caracas, Venezuela, to 36.8/100,000 per year
Organizational structure of the Aetiology of Childhood Diabetes on an Epi- in Sardinia and 36.5/100,000 per year in Fin-
WHO DiaMond incidence study demiological Basis (ACE) Study (3). Reg- land. This represents a 350-fold variation
The WHO DiaMond Incidence Data Center istries are either prospective, retrospective, in the incidence among the 100 populations
located at the Diabetes and Genetic Epi- or a combination of both. Participating cen- worldwide (Table 1). One-third of the pop-
demiology Unit of the National Public ters have submitted annual incidence data ulations (33 of 100) had an intermediate
Health Institute in Helsinki, Finland, has to the WHO DiaMond data center in incidence of type 1 diabetes. The variation in
served as the coordinating center for the Helsinki using standardized forms. Data incidence is described also in Fig. 1, where
DiaMond incidence study. Two DiaMond on sex, ethnic group, date of birth, date of the incidence of different participating cen-
coordinating centers (in Helsinki, Finland, first insulin administration, source of data ters in 50 countries is arranged in descending
and Pittsburgh, PA) together developed the on family history of diabetes (the diabetes order according to the incidence.
standards for the incidence studies, assisted status of siblings, parents, and children of The populations on the African conti-
in processing the data, and assisted in the registered cases) are included in the data- nent (all from northern Africa) had interme-
coordination of the data analysis. Each of base. Additional registries are participating diate incidence rates of type 1 diabetes. Only
the 100 participating centers is headed by a in the WHO DiaMond project and began Mauritius, the island on the east coast of the
local principal investigator who was respon- data collection after the year 1994 and continent, had a low incidence. Most of the
sible for data collection and for the day-to- therefore are not included in this article. populations in the Asian continent (27 of
day aspects of the fieldwork (see APPENDIX). 29) had a very low or low incidence. Excep-
To be eligible to participate in the WHO Quality control of data tions were Israel with an intermediate inci-
DiaMond study, each center must have a Each data file analyzed in the data center dence and Kuwait with a high incidence,
well-defined population-based registry was sent back to the centers for final check- both of which represent Caucasoid popula-
where the incidence is accurately defined. ing and data cleaning to ensure the accu- tions. Of the European populations, one-half
Every participating center prepared its own racy of the data. Completeness of (18 of 39) had intermediate incidence rates,
local methods of operation for the inci- registration was confirmed by estimating and the rest (21 of 39) had high or very high
dence study by following the framework the degree of ascertainment using the cap- incidence rates. Particularly high incidence
provided by the WHO DiaMond incidence ture–recapture method (19) in most cen- rates occurred in Sardinia and Finland
study. In the local methods of operation, ters. In some centers, this was not (37/100,000 per year). Other populations
centers described the population base, the necessary because of complete coverage of with very high incidence rates in Europe
design of the registry, sources of data, data the primary source. According to the WHO were in Sweden and Norway. Despite the
management, data items, and the time DiaMond methods of operation, the pri- small total number of cases in Portalegre,
schedule for data collection. mary data source consists of the cases of Portugal, the incidence of type 1 diabetes
type 1 diabetes who fulfill the criteria for was consistently high each year during the
Incidence study population registration and have been identified from study. Among all North American popula-
The denominator for the analysis was chil- hospital records or from the records of tions, incidence rates were high. In Canada,
dren 14 years of age with residency in pediatricians or family physicians. As a sec- Alberta and Prince Edward Island had par-
the study area, which was defined geo- ondary (independent) source for cases, ticularly high incidence rates. The incidence
graphically to correspond with adminis- records of the local diabetes association, of type 1 diabetes among populations in
trative and census boundaries. The total school health records, or social insurance South America ranged from intermediate (5
number of people 14 years of age in the schemes have been used. of 11) to very low (3 of 11). In Central
Table 1—Age-standardized incidence of type 1 diabetes in children 14 years of age (per 100,000 per year)
Table 1—Continued
Table 1—Continued
America and the West Indies, the popula- was relatively small. In New Zealand, the Age-specific incidence of type 1 dia-
tions in Puerto Rico and Virgin Islands had incidence in Canterbury was 21.9/100,000 betes was calculated in 5-year age-groups
high incidence rates, and the rest of the pop- per year and was only half of that in Auck- (0–4, 5–9, and 10–14 years) (Table 2). In
ulations had intermediate or low incidence land (12.3/100,000 per year). Nearly most populations, the incidence rates
rates. In Oceania, the incidence rates were 50-fold within-country variation was increased with age and were the highest
high in Australia and New Zealand, particu- observed in China, where incidence rates among children 10–14 years of age. The
larly in the Canterbury region of New varied from 0.1/100,000 per year in Zunyi variation in incidence rates across age-
Zealand. to 4.6/100,000 per year in Wuhan. In groups was examined using pooled popu-
Noticeable within-country variation in some Chinese centers, the total number lation and incidence data from all centers
incidence rates was observed in Italy, where of cases was small; therefore, the results in the linear regression model. The differ-
the incidence in Sardinia (36.8/100,000 should be interpreted with caution. ence in incidence rates between the age-
per year) was 3–5 times higher than the The male-to-female ratio in incidence groups was statistically significant (P
incidence rates in the centers in continen- was calculated for 98 populations (Table 0.0001). However, in some populations,
tal Italy. In Portugal, the difference in inci- 1). A statistically significant male excess in the incidence rates were nearly the same in
dence rates between centers was 3-fold and incidence rate was found in Sardinia all 3 age-groups.
was lowest on Madeira Island (7.2/100,000 (Italy), Oxford (U.K.), and Santafe de
per year) and highest in Portalegre Bogota (Columbia). No populations had a CONCLUSIONS — The sample popu-
(21.1/100,000 per year); however, the statistically significant female excess in lation (75.1 million) for which the inci-
number of cases in all Portugese centers incidence rate. dence of type 1 diabetes is estimated covers
Netherlands
Figure 1—Age-standardized incidence (per 100,000 per year) of type 1 diabetes in children 14 years of age in 100 populations. Data for boys and girls
have been pooled. Countries are arranged in descending order according to the incidence. (Puerto Rico and Virgin Islands are presented separately from other
populations in the U.S.)
Table 2—Age-specific incidence of type 1 diabetes in children 14 years of age (per 100,000 per year)
Table 2—Continued
Table 2—Continued
4.5% of the world’s population 14 years ulations worldwide, and the increase is par- degree of ascertainment is based on the
of age. To our knowledge, this represents ticularly high in populations with a low capture–recapture method to determine
the largest standardized survey for any dis- incidence (20). Whether this is a true the degree of underestimation of cases
ease. Most of the incidence data come from increase resulting from changing environ- (19). An underestimation is probably
European countries. During the first half of mental or lifestyle factors or is simply an inherent in all registration systems, but the
the 1990s, several incidence registries were improvement in case ascertainment is cur- problem can be avoided by using statistical
established in the Asian continent — most rently impossible to determine because the methods to measure and adjust for it. In
of them in China. Although incidence data 5-year period covered in this analysis is too practice, in some countries collecting inci-
from North and South America and Africa short to accumulate enough cases for dence data on type 1 diabetes, secondary
are still sparse, the increased information appropriate analysis. Also, the within- sources for ascertainment of cases are not
on the incidence of type 1 diabetes among country variation in incidence in some available or are difficult to find. However,
Asian populations has changed the pattern countries may be random because of a 80% of registries checked for underesti-
of global variation in incidence. The differ- small number of cases; therefore, data for a mation used 2 independent sources and
ence between the highest incidence rates in longer period are needed before those spa- the capture–recapture method (19). Two
Sardinia and Finland and the lowest inci- tial differences could be confirmed. populations had very low case ascertain-
dence rate in China was 350-fold during The WHO DiaMond project (21) is a ment rates (50%); however, data from
the first half of the 1990s. global effort to determine for the first time these populations were available only for
The incidence of type 1 diabetes the incidence of type 1 diabetes using stan- 1 year, so the results should be interpreted
appears to be increasing in almost all pop- dardized incidence registries where the with caution.
The global pattern of the incidence of nator, Prof. Anders Green, for collaborative sup- G. Bruno and Prof. G. Pagano (Turin
type 1 diabetes has not changed markedly port on this study. The opinions expressed in province); Dr. M. Songini, Dr. A. Casu, Dr. A.
since the reports published during the 1970s this article are those of the authors and not nec- Marinaro, Dr. R. Ricciardi, Dr. M.A. Zedda,
and 1980s. The earlier assumed polar-equa- essarily those of the World Health Organization. and Dr. A. Milia (Sardinia); Dr. M. Tenconi
torial gradient in the incidence of type 1 dia- and Dr. G. Devoti (Pavia province); Prof. P.
betes (1,2,4,5) does not seem to be as strong APPENDIX Pozzilli, Dr. N. Visalli, Dr. L. Sebastiani, Dr. G.
as previously assumed. From 1990 to 1994, Marietti, and Dr. R. Buzzetti (Lazio region);
the incidence rates of type 1 diabetes were WHO Multinational Project for and Dr. V. Cherubini (Region Marche). Japan:
highest in Sardinia and Finland. However, Childhood Diabetes (DiaMond) Dr. A. Okuno, Dr. S. Harada, and Dr. N.
these populations are 3,000 km from each Research Group Matsuura (Hokkaido); Dr. E. Miki, Dr. S.
other and have different environments and Algeria: Dr. K. Bessaoud (Oran). Argentina: Miyamoto, and Dr. N. Sasaki (Chiba); and Dr.
distinctive genetic backgrounds (22,23). The Dr. M. Molinero de Ropolo (Cordoba); Dr. M. G. Mimura (Okinawa). Kuwait: Dr. A.
incidence rates in these populations were de Sereday, M.L. Marti, Dr. M. Damiano, and Shaltout and Dr. Mariam Qabazrd. Latvia: Dr.
substantially higher than those in the other Dr. M. Moser (Avellaneda); and Dr. S. Laper- G. Brigis. Lithuania: Dr. B. Urbonaite. Lux-
high-incidence populations presented in this tosa (Corrientes). Australia: Dr. C. Verge and embourg: Dr. C. de Beaufort. Mauritius: Dr.
report. Although the populations with very Dr. N. Howard (New South Wales). Austria: H. Gareeboo. Mexico: Dr. O. Aude Rueda
high incidence rates were europid popula- Dr. E. Schober. Barbados: Dr. O. Jordan. Bel- (Veracruz). The Netherlands: Dr. M. Reeser (5
tions in Europe and other continents, popu- gium: Dr. I. Weets, Dr. C. Vandevalle, Dr. I. De regions). New Zealand: Dr. R. Elliott (Auck-
lations with a relatively high incidence rate Leeuw, Dr. F. Gorus, Dr. M. Coeckelberghs, land) and Dr. R. Scott, Dr. J. Willis, and Dr. B.
were also found in tropical or subtropical and Dr. M. Du Caju (Antwerp region). Brazil: Darlow (Canterbury). Norway: Dr. G. Joner
areas such as Kuwait (24) and Puerto Rico Dr. L. J. Franco and Dr. S.R.G. Ferreira (3 cen- (8 counties). Pakistan: Dr. G. Rafique
(25). In fact, a relatively wide gradient of risk ters, state of Sao Paulo). Bulgaria: Dr. R. (Karachi). Paraguay: Dr. J. Jimenez, Dr. C.M.
was observed among some noneuropid eth- Savova and Prof. V. Christov (West Bulgaria) Palaeios, Dr. F. Canete, Dr. J. Vera, and Dr. R.
nic groups (i.e., admixed partly African and Dr. V. Iotova and Prof. Valentina Tzaneva Almiron. Peru: Dr. S. Seclén (Lima). Poland:
[1.4/100,000 per year in Mauritius vs. 15.0/ (Varna). Canada: Dr. E. Toth (Alberta) and Dr. Dr. D. Woznicka, Dr. P. Fichna (Wielkopol-
100,000 per year in Chicago] and Arab M.H. Tan (Prince Edward Island). Chile: Dr. ska) and Dr. Z. Szybinski (Cracow). Portugal:
[5.0/100,000 per year in Sudan vs. 18.3/ E. Carrasco and Dr. G. Lopez (Santiago). Dr. C. Menezes (Portalegre), Dr. E.A. Pina
100,000 per year in Kuwait] populations). China: Dr. Yang Ze (Henan, Dalian, Guilin, (Algarve region), Dr. M.M.A. Ruas and Dr.
The explanation for these wide risk dispari- Jilin, Nanning, and Zunyi); Dr. Bo Yang (Tiel- F.J.C. Rodrigues (Coimbra), and Dr. S. Abreu
ties within ethnic groups may lie in differ- ing); Dr. Chen Shaohua and Dr. Fu Lihua (Madeira Island). Romania: Dr. C. Ionescu-
ences in genetic admixture or environmental/ (Jinan); Dr. Deng Longqi (Sichuan); Dr. Shen Tirgoviste (Bucharest region). Russia: Dr. E.
behavioral factors. Although this study pro- Shuixian (Shanghai); Dr. Teng Kui (Wulu- Shubnikof (Novosibirsk). Slovakia: Dr. D.
vides the most comprehensive data on the muqi); Dr. Wang Chunjian, Dr. H. Jian, and Michalkova. Slovenia: Prof. C. Krzisnik, Dr.
incidence of childhood diabetes and its vari- Dr. J. Ju (Zhengzhou); Dr. Yan Chun and Dr. N. Bratina-Ursic, Dr. T. Battelino, and Dr. P.
ation worldwide, it cannot give answers Y. Ze (Beijing); Dr. Deng Yibing and Dr. Li Cai Brcar-Strukelj. Spain: Dr. A. Goday, Dr. C.
about the reasons behind such a huge (Changchun); Dr. Ying-Ting Zhang (Jilin Castell, and Dr. C. Lloveras (Catalonia).
between-population variation. Such descrip- province); Dr. Liu Yuqing and Dr. Long Sudan: Dr. M. Magzoub (Gezira province).
tive data are, however, necessary for the Xiurong (Shenyang); Dr. Zhaoshou Zhen Sweden: Prof. G. Dahlquist. Tunisia: Dr. K.
development and testing of potential genetic (Huhehot); Dr. Zhiying Sun (Dalian); Prof. Nagati (Kairouan) and Dr. F.B. Khalifa (Gafsa,
and environmental hypotheses. One of the Wang Binyou (Harbin); and Dr. Gary Wing- Beja, Monastir). U.K.: Dr. A. Burden and N.
aims in establishing the epidemiological Kin Wong (Hong Kong). Colombia: Dr. P. Raymond (Leicestershire); Dr. B.A. Millward
databases within the WHO DiaMond project Aschner (Santafè de Bogotà, D.C.). Cuba: Dr. and Dr. H. Zhao (Plymouth); Dr. C.C. Patter-
was to create opportunities for further O. Mateo de Acosta, Dr. I. Hernández Cuesta, son, Dr. D. Carson, and Prof. D. Hadden (N.
research into etiological factors in type 1 dia- Dr. F. Collado Mesa, and Dr. O. Diaz-Diaz. Ireland); Dr. P. Smail and Dr. B. McSporran
betes. These population-based studies have Denmark: Dr. B.S. Olsen, Dr. A.J. Svendsen, (Aberdeen); and Dr. P. Bingley (Oxford
already generated a large number of etiolog- Dr. J. Kreutzfeldt, and Dr. E. Lund (4 coun- region). U.S.: Dr. E.S. Tull (Virgin Islands), Dr.
ical studies. Certainly, in those societies ties). Dominica: Dr. E.S. Tull. Estonia: Dr. T. R.E. LaPorte and Dr. I. Libman (Allegheny
undergoing rapid social change, population Podar. Finland: Prof. J. Tuomilehto and Dr. M. County, PA), Dr. J. Roseman and Dr. S.M.
levels of exposure to presumed etiological Karvonen. France: Dr. C. Levy-Marchal and Atiqur Rahman (Jefferson County, AL), Dr. T.
agents for type 1 diabetes change rapidly Dr. P. Czernichow (4 regions). Germany: Dr. Frazer de Llado (Puerto Rico), and Dr. R. Lip-
during a relatively short period of time. A. Neu (Baden-Wuerttemberg). Greece: Dr. ton (Chicago). Uruguay: Dr. A.M. Jorge
Clearly, continuing and expanding surveil- C. Bartsocas, Dr. K. Kassiou, Dr. C. Dacou- (Montevideo). Venezuela: Dr. P. Gunczler and
lance for childhood diabetes across the world Voutetaki, Dr. A.C. Kafourou, Dr. Al Al- Dr. R. Lanes (Caracas, second center), Dr. H.
represents one of the most potent strategies Qadreh, and Dr. C. Karagianni (Attica King (WHO, Geneva, Switzerland).
for understanding the multifactorial etiology region). Hungary: Dr. Gyula Soltesz (18
of the disease and ultimately preventing it. counties). Israel: Prof. Z. Laron, Dr. O. Gor- References
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