Current Diabetes Reports

, Volume 10, Issue 5, pp 362–369 | Cite as

The Value of National Diabetes Registries: SEARCH for Diabetes in Youth Study

  • Dana Dabelea
  • Elizabeth J. Mayer-Davis
  • Giuseppina Imperatore


Diabetes mellitus is one of the most common severe chronic diseases of childhood. Much of our knowledge of the epidemiology of diabetes in young people has been generated by large collaborative efforts based on standardized registry data, such as the DIAMOND Project worldwide and the EURODIAB study in Europe. These registries showed that although at the start of the 20th century childhood diabetes was rare, by the end of the century a steady increase in incidence had been reported in many parts of the world. However, epidemiologic data for temporal trends in pediatric diabetes are still lacking or are minimal for most of the global population of youth, including in the United States. In addition, the epidemiology of diabetes in youth is changing. As youth are becoming increasingly overweight, we are seeing more obese children with a clinical phenotype of type 2 diabetes or “adult-onset” diabetes. It is imperative that efforts directed at surveillance of diabetes in young people continue and expand, not only to understand its complex etiology, but also because of its increasing public health importance.


Diabetes Youth Registry Incidence Prevalence Trends Risk factors Complications Surveillance Ascertainment 



The contents of this paper are solely the responsibility of the authors and do not necessarily represent the official positions of the US Centers for Disease Control and Prevention.


No potential conflicts of interest relevant to this article were reported.


Papers of particular interest, published recently, have been highlighted as:•• Of major importance

  1. 1.
    DIAMOND Project Group: Incidence and trends of childhood type 1 diabetes worldwide 1990–1999. Diabet Med 2006, 23:857–866.CrossRefGoogle Scholar
  2. 2.
    Green A, Gale EA, Patterson CC: Incidence of childhood-onset insulin-dependent diabetes mellitus: the EURODIAB ACE study. Lancet 1992, 339:1113–1119.Google Scholar
  3. 3.
    Green A, Patterson CC: Trends in the incidence of childhood-onset diabetes in Europe 1989–1998. Diabetologia 2001, 44:B3–B8.CrossRefPubMedGoogle Scholar
  4. 4.
    LaPorte RE, Tajima N, Akerblom HK, et al.: Geographic differences in the risk of insulin-dependent diabetes mellitus: the importance of registries. Diabetes Care 1985, 8(Suppl 1):101–107.PubMedGoogle Scholar
  5. 5.
    Green A, King HO, LaPorte RE: Workshop on diabetes registries, the role of IDDM registries in diabetes research and care: summary report. In Diabetes. Edited by Serrano-Rios M, Lefebvre PJ. Amsterdam: Elsevier Science Publishers B.V.; 1985:443–448.Google Scholar
  6. 6.
    •• Patterson CC, Dahlquist GG, Gyurus E, et al.: Incidence trends for childhood type 1 diabetes in Europe during 1989–2003 and predicted new cases 2005-20: a multicentre prospective registration study. Lancet 2009, 373:2027–2033. This paper provides updated estimates of trends in incidence of T1D in individuals less than 15 years of age in Europe, from 1989 to 2003. Fifteen-year incidence data collected by 20 population-based registries in 17 countries were used to estimate rates of increase in geographic regions within Europe. Model-based rates of increase were then used to predict the number of new cases throughout Europe by 2020. The prediction is that new cases in European children less than 5 years of age will double, and the prevalence of cases in those under 15 years of age will increase by 70%, between 2005 and 2020.CrossRefPubMedGoogle Scholar
  7. 7.
    •• Vehik K, Hamman RF, Lezotte D, et al.: Increasing incidence of type 1 diabetes in 0- to 17-year-old Colorado youth. Diabetes Care 2007, 30:503–509. Using data from the Colorado IDDM registry and the SEARCH-Colorado site, the incidence of T1D was shown to have increased in youth ≤17 years of age over the past three decades. During a 26-year period, the incidence of T1D increased by 2.3% (95% CI, 1.6–3.1) per year. The increase was significant for both NHW (2.7%; 95% CI, 1.9 –3.6 per year; P < 0.0001) and Hispanic youth (1.6%; 0.2–3.1 per year; P < 0.013). The increase in incidence was highest among the 0- to 4-year-old age group (3.5%; 95% CI, 2.1–4.9 per year; P < 0.001).CrossRefPubMedGoogle Scholar
  8. 8.
    Secular trends in incidence of childhood IDDM in 10 countries. Diabetes Epidemiology Research International (DERI) Group [no authors listed]. Diabetes 1990, 39:858–864.Google Scholar
  9. 9.
    Glaser SL, Clarke CA, Gomez SL, et al.: Cancer surveillance research: a vital subdiscipline of cancer epidemiology. Cancer Causes Control 2005, 16:1009–1019.CrossRefPubMedGoogle Scholar
  10. 10.
    Wingo PA, Howe HL, Thun MJ, et al.: A national framework for cancer surveillance in the United States. Cancer Causes Control 2005, 16:151–170.CrossRefPubMedGoogle Scholar
  11. 11.
    Liese AD, Lawson A, Song HR, et al.: Evaluating geographic variation in type 1 and type 2 diabetes mellitus incidence in youth in four US regions. Health Place 2010, 16:547–556.CrossRefPubMedGoogle Scholar
  12. 12.
    Wadwa RP, Urbina EM, Anderson AM, et al.: Measures of arterial stiffness in youth with type 1 and type 2 diabetes: the SEARCH for diabetes in youth study. Diabetes Care 2010, 33:881–886.CrossRefPubMedGoogle Scholar
  13. 13.
    Dabelea D, Mayer-Davis EJ, Lamichhane AP, et al.: Association of intrauterine exposure to maternal diabetes and obesity with type 2 diabetes in youth: the SEARCH Case-Control Study. Diabetes Care 2008, 31:1422–1426.CrossRefPubMedGoogle Scholar
  14. 14.
    Dabelea D, D'Agostino RB Jr, Mayer-Davis EJ, et al.: Testing the accelerator hypothesis: body size, beta-cell function, and age at onset of type 1 (autoimmune) diabetes. Diabetes Care 2006, 29:290–294.CrossRefPubMedGoogle Scholar
  15. 15.
    Greenbaum CJ, Anderson AM, Dolan LM, et al.: Preservation of beta-cell function in autoantibody-positive youth with diabetes. Diabetes Care 2009, 32:1839–1844.CrossRefPubMedGoogle Scholar
  16. 16.
    Maahs DM, Snively BM, Bell RA, et al.: Higher prevalence of elevated albumin excretion in youth with type 2 than type 1 diabetes: the SEARCH for Diabetes in Youth study. Diabetes Care 2007, 30:2593–2598.CrossRefPubMedGoogle Scholar
  17. 17.
    Rewers A, Klingensmith G, Davis C, et al.: Presence of diabetic ketoacidosis at diagnosis of diabetes mellitus in youth: the Search for Diabetes in Youth Study. Pediatrics 2008,121:e1258–e1266.CrossRefPubMedGoogle Scholar
  18. 18.
    SEARCH Study Group: SEARCH for Diabetes in Youth: a multicenter study of the prevalence, incidence and classification of diabetes mellitus in youth. Control Clin Trials 2004, 25:458–471.CrossRefGoogle Scholar
  19. 19.
    The SEARCH for Diabetes in Youth Study Group, Liese AD, D'Agostino RB Jr, et al.: The burden of diabetes mellitus among U.S. youth: prevalence estimates from the SEARCH for Diabetes in Youth Study. Pediatrics 2006, 118:1510–1518.Google Scholar
  20. 20.
    •• Writing Group for the SEARCH for Diabetes in Youth Study Group, Dabelea D, Bell RA, et al.: Incidence of diabetes in youth in the United States. JAMA 2007, 297:2716–2724. This paper presents the baseline incidence rates of T1D and T2D in youth less than 20 years of age in the U.S. Since 2002, approximately 5.5 million children less than 20 years of age have been under surveillance each year by SEARCH research centers to estimate diabetes incidence by type, age, sex, and race/ethnicity. SEARCH estimated that annually 15,000 youth are diagnosed with T1D, and 3700 youth are diagnosed with T2D. Additionally, SEARCH data indicate that diabetes prevalence and incidence vary across major racial/ethnic groups.Google Scholar
  21. 21.
    Rewers M, Norris J, Dabelea D: Epidemiology of type 1 diabetes mellitus. Adv Exp Med Biol 2004, 552:219–246.PubMedGoogle Scholar
  22. 22.
    Rewers M, LaPorte R, Walczak M, et al.: Apparent epidemic of insulin-dependent diabetes mellitus in midwestern Poland. Diabetes 1987, 36:106–113.CrossRefPubMedGoogle Scholar
  23. 23.
    Nystrom L, Dahlquist G, Rewers M, Wall S: The Swedish childhood diabetes study. An analysis of the temporal variation in diabetes incidence 1978–1987. Int J Epidemiol 1990, 19:141–146.CrossRefPubMedGoogle Scholar
  24. 24.
    Tuomilehto J, Virtala E, Karvonen M, et al.: Increase in incidence of insulin-dependent diabetes mellitus among children in Finland. Int J Epidemiol 1995, 24:984–992.CrossRefPubMedGoogle Scholar
  25. 25.
    Tuomilehto J, Rewers M, Reunanen A, et al.: Increasing trend in type 1 (insulin-dependent) diabetes mellitus in childhood in Finland. Analysis of age, calendar time and birth cohort effects during 1965 to 1984. Diabetologia 1991, 34:282–287.CrossRefPubMedGoogle Scholar
  26. 26.
    Dokheel TM: An epidemic of childhood diabetes in the United States? Diabetes Care 1993, 16:1606–1611.CrossRefPubMedGoogle Scholar
  27. 27.
    Scott RS, Brown LJ, Darlow BA, et al.: Temporal variation in incidence of IDDM in Canterbury, New Zealand. Diabetes Care 1992, 15:895–899.CrossRefPubMedGoogle Scholar
  28. 28.
    Bruno G, Merletti F, De Salvia A, et al.: Comparison of incidence of insulin-dependent diabetes mellitus in children and young adults in the Province of Turin, Italy, 1984-91. Piedmont Study Group for Diabetes Epidemiology. Diabet Med 1997, 14:964–969.CrossRefPubMedGoogle Scholar
  29. 29.
    Padaiga Z, Tuomilehto J, Karvonen M, et al.: Incidence trends in childhood onset IDDM in four countries around the Baltic sea during 1983–1992. Diabetologia 1997, 40:187–192.CrossRefPubMedGoogle Scholar
  30. 30.
    LaPorte RE, Fishbein HA, Drash AL, Kuller LH: The Pittsburgh insulin-dependent diabetes mellitus (IDDM) registry. The incidence of insulin-dependent diabetes mellitus in Allegheny County, Pennsylvania (1965–1976). Diabetes 1981, 30:279–284.Google Scholar
  31. 31.
    Kostraba JN, Gay EC, Cai Y, et al.: Incidence of insulin-dependent diabetes mellitus in Colorado. Epidemiology 1992, 3:232–238.CrossRefPubMedGoogle Scholar
  32. 32.
    Onkamo P, Vaananen S, Karvonen M, Tuomilehto J: Worldwide increase in incidence of type I diabetes—the analysis of the data on published incidence trends. Diabetologia 1999, 42:1395–1403.CrossRefPubMedGoogle Scholar
  33. 33.
    LaPorte RE, Matsushima M, Chang YF: Prevalence and incidence of insulin-dependent diabetes. Bethesda, MD: National Institutes of Health; 1995 (NIH publ. no. 95–1468).Google Scholar
  34. 34.
    Bell RA, Mayer-Davis EJ, Beyer JW, et al.: Diabetes in non-Hispanic white youth. prevalence, incidence and clinical characteristics: The SEARCH for Diabetes in Youth Study. Diabetes Care 2009, 32:S102–S111.CrossRefPubMedGoogle Scholar
  35. 35.
    Dabelea D, Pettitt DJ, Jones KL, Arslanian SA: Type 2 diabetes mellitus in minority children and adolescents. An emerging problem. Endocrinol Metab Clin North Am 1999, 28:709–729.CrossRefPubMedGoogle Scholar
  36. 36.
    Kitagawa T, Mano T, Fujita H: The epidemiology of childhood diabetes mellitus in Tokyo metropolitan area. Tohoku J Exp Med 1983, 141(Suppl):171–179.CrossRefPubMedGoogle Scholar
  37. 37.
    Lipton R, Keenan H, Onyemere KU, Freels S: Incidence and onset features of diabetes in African-American and Latino children in Chicago, 1985–1994. Diabetes Metab Res Rev 2002, 18:135–142.CrossRefPubMedGoogle Scholar
  38. 38.
    Pinhas-Hamiel O, Dolan LM, Zeitler PS: Diabetic ketoacidosis among obese African-American adolescents with NIDDM. Diabetes Care 1997, 20:484–486.CrossRefPubMedGoogle Scholar
  39. 39.
    Macaluso CJ, Bauer UE, Deeb LC, et al.: Type 2 diabetes mellitus among Florida children and adolescents, 1994 through 1998. Public Health Rep 2002, 117:373–379.PubMedGoogle Scholar
  40. 40.
    Scott CR, Smith JM, Cradock MM, Pihoker C: Characteristics of youth-onset noninsulin-dependent diabetes mellitus and insulin-dependent diabetes mellitus at diagnosis. Pediatrics 1997, 100:84–91.CrossRefPubMedGoogle Scholar
  41. 41.
    Dabelea D, Hanson RL, Bennett PH, et al.: Increasing prevalence of type II diabetes in American Indian children. Diabetologia 1998, 41:904–910.CrossRefPubMedGoogle Scholar
  42. 42.
    Schober E, Holl RW, Grabert M, et al.: Diabetes mellitus type 2 in childhood and adolescence in Germany and parts of Austria. Eur J Pediatr 2005, 164:705–707.CrossRefPubMedGoogle Scholar
  43. 43.
    Ortega-Rodriguez E, Levy-Marchal C, Tubiana N, et al.: Emergence of type 2 diabetes in an hospital based cohort of children with diabetes mellitus. Diabetes Metab 2001, 27:574–578.PubMedGoogle Scholar
  44. 44.
    Feltbower RG, McKinney PA, Campbell FM, et al.: Type 2 and other forms of diabetes in 0–30 year olds: a hospital based study in Leeds, UK. Arch Dis Child 2003, 88:676–679.CrossRefPubMedGoogle Scholar
  45. 45.
    Liu LL, Yi JP, Beyer J, et al.: Type 1 and type 2 diabetes in Asian and Pacific Islander U.S. youth: the SEARCH for Diabetes in Youth Study. Diabetes Care 2009, 32(Suppl 2):S133–S140.CrossRefPubMedGoogle Scholar
  46. 46.
    Dabelea D, DeGroat J, Sorrelman C, et al.: Diabetes in Navajo youth: prevalence, incidence, and clinical characteristics: the SEARCH for Diabetes in Youth Study. Diabetes Care 2009, 32(Suppl 2):S141–S147.CrossRefPubMedGoogle Scholar
  47. 47.
    Liu LL, Lawrence JM, Davis C, et al.: Prevalence of overweight and obesity in youth with diabetes in USA: the SEARCH for Diabetes in Youth Study. Pediatr Diabetes 2010, 11:4–11.CrossRefPubMedGoogle Scholar
  48. 48.
    Mayer-Davis EJ, Beyer J, Bell RA, et al.: Diabetes in African American youth: prevalence, incidence, and clinical characteristics: the SEARCH for Diabetes in Youth Study. Diabetes Care 2009, 32(Suppl 2):S112–S122.CrossRefPubMedGoogle Scholar
  49. 49.
    Mayer-Davis EJ, Bell RA, Dabelea D, et al.: The many faces of diabetes in American youth: type 1 and type 2 diabetes in five race and ethnic populations: the SEARCH for Diabetes in Youth Study. Diabetes Care 2009, 32(Suppl 2):S99–101.CrossRefPubMedGoogle Scholar
  50. 50.
    Lawrence JM, Mayer-Davis EJ, Reynolds K, et al.: Diabetes in Hispanic American youth: prevalence, incidence, demographics, and clinical characteristics: the SEARCH for Diabetes in Youth Study. Diabetes Care 2009, 32(Suppl 2):S123–S132.CrossRefPubMedGoogle Scholar
  51. 51.
    Petitti DB, Klingensmith GJ, Bell RA, et al.: Glycemic control in youth with diabetes: the SEARCH for diabetes in Youth Study. J Pediatr 2009, 155:668–672.CrossRefPubMedGoogle Scholar
  52. 52.
    Patrick SL, Kadohiro JK, Waxman SH, et al.: IDDM incidence in a multiracial population. The Hawaii IDDM Registry, 1980–1990. Diabetes Care 1997, 20:983–987.CrossRefPubMedGoogle Scholar
  53. 53.
    Kershnar AK, Daniels SR, Imperatore G, et al.: Lipid abnormalities are prevalent in youth with type 1 and type 2 diabetes: the SEARCH for Diabetes in Youth Study. J Pediatr 2006, 149:314–319.CrossRefPubMedGoogle Scholar
  54. 54.
    Albers JJ, Marcovina SM, Imperatore G, et al.: Prevalence and determinants of elevated apolipoprotein B and dense LDL in youths with type 1 and type 2 diabetes. J Clin Endocrinol Metab 2008, 93:735–742.CrossRefPubMedGoogle Scholar
  55. 55.
    Petitti DB, Imperatore G, Palla SL, et al.: Serum lipids and glucose control: the SEARCH for Diabetes in Youth study. Arch Pediatr Adolesc Med 2007, 161:159–165.CrossRefPubMedGoogle Scholar
  56. 56.
    Rodriguez BL, Dabelea D, Liese AD, et al.: Prevalence and correlates of elevated blood pressure among youth with diabetes: the SEARCH for Diabetes in Youth Study. J Pediatr 2010 Apr 13 [Epub ahead of print].Google Scholar
  57. 57.
    Mayer-Davis EJ, Nichols M, Liese AD, et al.: Dietary intake among youth with diabetes: the SEARCH for Diabetes in Youth Study. J Am Diet Assoc 2006, 106:689–697.CrossRefPubMedGoogle Scholar
  58. 58.
    Gunther AL, Liese AD, Bell RA, et al.: Association between the dietary approaches to hypertension diet and hypertension in youth with diabetes mellitus. Hypertension 2009, 53:6–12.CrossRefPubMedGoogle Scholar
  59. 59.
    Libman IM, Pietropaolo M, Arslanian SA, et al.: Evidence for heterogeneous pathogenesis of insulin-treated diabetes in black and white children. Diabetes Care 2003, 26:2876–2882.CrossRefPubMedGoogle Scholar
  60. 60.
    Wilkin TJ: The accelerator hypothesis: weight gain as the missing link between type I and type II diabetes. Diabetologia 2001, 44:914–922.CrossRefPubMedGoogle Scholar
  61. 61.
    Larsson HE, Hansson G, Carlsson A, et al.: Children developing type 1 diabetes before 6 years of age have increased linear growth independent of HLA genotypes. Diabetologia 2008, 51:1623–1630.CrossRefPubMedGoogle Scholar
  62. 62.
    Lamb MM, Yin X, Zerbe GO, et al.: Height growth velocity, islet autoimmunity and type 1 diabetes development: the Diabetes Autoimmunity Study in the Young. Diabetologia 2009, 52:2064–2071.CrossRefPubMedGoogle Scholar
  63. 63.
    Knerr I, Wolf J, Reinehr T, et al.: The ‘accelerator hypothesis’: relationship between weight, height, body mass index and age at diagnosis in a large cohort of 9,248 German and Austrian children with type 1 diabetes mellitus. Diabetologia 2005, 48:2501–2504.CrossRefPubMedGoogle Scholar
  64. 64.
    Betts P, Mulligan J, Ward P, et al.: Increasing body weight predicts the earlier onset of insulin-dependent diabetes in childhood: testing the ‘accelerator hypothesis’ (2). Diabet Med 2005, 22:144–151.CrossRefPubMedGoogle Scholar
  65. 65.
    Lawrence JM, Standiford DA, Loots B, et al.: Prevalence and correlates of depressed mood among youth with diabetes: the SEARCH for Diabetes in Youth study. Pediatrics 2006, 117:1348–1358.CrossRefPubMedGoogle Scholar
  66. 66.
    Naughton MJ, Ruggiero AM, Lawrence JM, et al.: Health-related quality of life of children and adolescents with type 1 or type 2 diabetes: the SEARCH for Diabetes in Youth Study. Arch Pediatr Adolesc Med 2008, 162:649–657.CrossRefPubMedGoogle Scholar
  67. 67.
    Mayer-Davis EJ, Dabelea D, Lamichhane AP, et al.: Breast-feeding and type 2 diabetes in youth of three ethnic groups: the SEARCH for diabetes in youth case-control study. Diabetes Care 2008, 31:470–475.CrossRefPubMedGoogle Scholar
  68. 68.
    West NA, Hamman RF, Mayer-Davis EJ, et al.: Cardiovascular risk factors among youth with and without type 2 diabetes: differences and possible mechanisms. Diabetes Care 2009, 32:175–180.CrossRefPubMedGoogle Scholar
  69. 69.
    Gilliam LK, Pihoker C, Ellard S, et al.: Unrecognized Maturity-Onset Diabetes of the Young (MODY) due to HNF1-alpha mutations in the SEARCH for Diabetes in Youth Study. Diabetes 2007, 56(Suppl 1):287–OR.Google Scholar
  70. 70.
    Thomas DB: Alternatives to a national system of population-based state cancer registries. Am J Public Health 2002, 92:1064–1066.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  • Dana Dabelea
    • 1
  • Elizabeth J. Mayer-Davis
    • 2
  • Giuseppina Imperatore
    • 3
  1. 1.Colorado School of Public HealthUniversity of Colorado DenverAuroraUSA
  2. 2.Department of NutritionUniversity of North Carolina Chapel HillChapel HillUSA
  3. 3.Division of Diabetes Translation, Centers for Diseases Control and PreventionNCCDPHP/CDCAtlantaUSA

Personalised recommendations