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Rationale 
Diabetes surveillance holds promise to inform public health action by tracking rates over 
time and exploring population-level associations.  The relative recency of more 
comprehensive diabetes registries suggests that such public health impacts will only 
occur with the continuation of existing registries and the opportunities for further 
surveillance.  An efficient network of diabetes registries that cover major race/ethnic, 
geographic, and socioeconomic segments of the U.S. population with adequate resources 
can be utilized to provide national estimates (e.g. 
http://www.cdc.gov/diabetes/pubs/pdf/ndfs_2007.pdf
) of prevalence, incidence, 
presentation, temporal trends, and other outcomes, without the need for a national system 
(93)
.  In order to fully realize the potential of diabetes registries in youth, it is also 
necessary to develop simple and lower cost case definitions and classifications that can 
be used for diabetes surveillance in youth.  SEARCH will evaluate consistent, sustainable 
and simplified criteria for case classification for surveillance purposes, across centers, 
across racial/ethnic groups, and over time and will explore existing data and linkages 
with systems of care to determine if more efficient mechanisms for surveillance exist.  

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Section 4A - Study Objectives/Background and Significance (Phase 3 - 11/2010) 
Section 4A - Page 12 
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4.3.2.
 
Limitations of Existing Systems and Role of SEARCH 
There are a number of limitations to public health surveillance that have been identified 
by SEARCH that require further development.  These include difficulties in ascertaining 
youth with T2D and youth 15 years of age and older with either type of diabetes, groups 
that had not previously been included in the majority of ongoing studies of childhood 
diabetes.  While a substantial majority of youth with T1D (and younger children with 
T2D) receive care or consultation from pediatric endocrinologists 
(27)
, patterns of care for 
youth with T2D are not as well described.  In addition, the approach to determining the 
date of diabetes diagnosis, race/ethnicity, and the type of diabetes is often difficult using 
existing health care data, especially from administrative data sources which are 
developed for billing purposes and do not include and/or code this information 
consistently.  The ‘type’ of diabetes as applied by the care provider has been explored by 
SEARCH and found to agree well (>95%) with a pathophysiological assessment based 
on markers of autoimmunity and insulin resistance, for cases that fit the typical picture of 
T1D (young onset, no overweight, insulin using) and T2D (adolescent onset, overweight, 
minority youth, perhaps with no insulin treatment), indicating that clinical diabetes type 
as assessed by the care provider may be used as an initial step for surveillance purposes.  
However, it is not known whether the use of provider type is adequate for tracking trends 
in incidence by type, since there may be changes in provider beliefs and practices over 
time that will not be obvious from collected data.  SEARCH will explore additional 
collected data on main etiologic dimensions of diabetes type (autoantibodies, genetic 
predisposition to autoimmunity, insulin sensitivity, residual insulin secretion) to 
determine the sensitivity, specificity, and predictive values of constellations of variables 
that may improve on this and be useful for public health surveillance.  SEARCH will 
explore existing data systems (Indian Health Service, HMO, integrated health care 
system with electronic medical records) as other ways to extend and validate public 
health surveillance approaches on a pilot basis. 
4.4.
 
MORTALITY IN YOUTH WITH DIABETES 
Short term mortality risk in youth with DM is an indicator of quality of health care.  It may 
also be associated with socio-demographic factors, including sex, race/ethnicity, 
socioeconomic status, and access to health care.  Few studies have evaluated mortality risk 
among persons diagnosed with DM during childhood and the majority has been limited to 
persons with T1D.  Population-based studies from countries including the United Kingdom 
(94)
, Italy 
(95)
, Scandinavia 
(96 - 98)
, Estonia and Lithuania 
(99)
, and the United States 
(100)
 all 
reported increased mortality for persons with youth-onset DM compared to the general 
population.  The Chicago Childhood Diabetes Registry investigators reported standardized 
mortality ratios of 1.90 for African Americans and 3.37 for Latinos for youth diagnosed with 
DM at < 18 years compared to an age-matched population 
(100)
.  DKA was the most frequent 
cause of death, while deaths from CVD, infection, trauma, and other causes were also 

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Section 4A - Study Objectives/Background and Significance (Phase 3 - 11/2010) 
Section 4A - Page 13 
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observed.  Among Pima Indians with early-onset (<20 years) T2D, the SMR for this group 
was 3.0 compared to the non-DM population;
(102)
 4 of the 11 deaths attributed to diabetic 
nephropathy.  As part of the SEARCH Registry study, we will determine overall and cause-
specific mortality rates and risk factors for mortality among over 9,000 racially/ethnically 
diverse youth diagnosed with T1D and T2D from a contemporary (2002-2008) cohort. 

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Section 4A - Study Objectives/Background and Significance (Phase 3 - 11/2010) 
Section 4A - Page 14 
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Reference List 
 
1.
 
Karvonen M, Tuomilehto J, Libman I, LaPorte R. A review of the recent epidemiologic data 
on the worldwide incidence of type I (insulin-dependent) diabetes mellitus. Diabetologia 
1993;36:883-92. 
2.
 
The DIAMOND Project Group. Incidence and trends of childhood Type 1 diabetes 
worldwide 1990-1999. Diabet Med 2006;23:857-66. 
3.
 
Green A, Gale EAM, Patterson CC. Incidence of childhood-onset insulin-dependent 
diabetes mellitus: the EURODIAB ACE study. Lancet 1992;339:1113-9. 
4.
 
Green A,.Patterson CC. Trends in the incidence of childhood-onset diabetes in Europe 
1989-1998. Diabetologia.44(15):B3-8, 2001. 
5.
 
Writing Group for the SEARCH for Diabetes in Youth Study Group; Dabelea D, Bell RA, 
D'Agostino RB, Jr., Imperatore G, Johansen JM, Linder B et al. Incidence of diabetes in 
youth in the United States. J.A.M.A. 2007;297:2716-24. 
6.
 
LaPorte RE, Tajima N, Akerblom HK, Berlin N, Brosseau J, Christy M, Drash AL, Fishbein 
H, Green A, Hamman R. Geographic differences in the risk of insulin-dependent diabetes 
mellitus: the importance of registries. Diab.Care 1985;8 (Suppl 1):101-7. 
7.
 
Green A, King HOM, LaPorte RE. Workshop on Diabetes Registies, The Role of IDDM 
Registries in Diabetes Research and Care: Summary Report. In Serrano-Rios M, Lefebvre 
PJ, eds. Diabetes 1985, pp 443-8. Elsevier Science Publishers B.V., 1986. 
8.
 
Patterson CC, Dahlquist GG, Gyurus E, Green A, Soltesz G. 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;373:2027-33. 
9.
 
Vehik K, Hamman RF, Lezotte D, Norris JM, Klingensmith G, Bloch C, Rewers M, 
Dabelea D. Increasing incidence of type 1 diabetes in 0- to 17-year-old Colorado youth.