What can large population-based birth cohort study ask about past, present and future of children with disorders of development, learning and behaviour?

A large cohort consisting of all children born to mothers from community provides ‘natural’ selection into different exposures and is a powerful resource for epidemiological research. A large population-based birth cohort with detailed systematic information already recorded, as part of longitudinal medical care, historical and current school data, detailed birth certificate data and all three resources available for every member of the birth cohort, are extremely rare. Our population-based birth cohort consists of all children born between 1976 and 2000 to mothers residing in Olmsted County, Minnesota, at the time of child's birth (N=39 890). In this paper, we provide a comprehensive report of the method describing the identification, the characteristics and longitudinal follow-up of each child (and family members) from the birth cohort, wealth of complementary resources of data and study measures and designs (retrospective, combined retrospective/prospective). In the last decade or so, we obtained scientific and clinically needed answers for incidence rates, potential risk/protective factors, treatment, comorbidities, outcomes, cost/usage and potential biases (that are always assessed and clinically interpreted) of many developmental learning and behavioural disorders (DLBDs) including learning and attention-deficit/hyperactivity disorders, intellectual disability, speech-language impairment and autism spectrum disorder. Many current and future questions related to DLBDs are remaining to be answered. The Olmsted County Birth Cohort (OCBC) is an example of a comprehensive, contemporary epidemiological research model for the development of similar research infrastructures, and its current and future results are important for replication and comparison with other population-based retrospective and prospective birth cohort studies.

[1]  Maureen S. Durkin,et al.  Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012 , 2018, Morbidity and mortality weekly report. Surveillance summaries.

[2]  Noele P. Nelson,et al.  Surveillance of Vaccination Coverage Among Adult Populations - United States, 2014. , 2016, Morbidity and mortality weekly report. Surveillance summaries.

[3]  R. Voigt,et al.  Neurodevelopment of children exposed to anesthesia: design of the Mayo Anesthesia Safety in Kids (MASK) study. , 2015, Contemporary clinical trials.

[4]  Thomas R Insel,et al.  Mental disorders in childhood: shifting the focus from behavioral symptoms to neurodevelopmental trajectories. , 2014, JAMA.

[5]  W. Barbaresi,et al.  ADHD and Learning Disabilities in Former Late Preterm Infants: A Population-Based Birth Cohort , 2013, Pediatrics.

[6]  T. Insel,et al.  Toward the future of psychiatric diagnosis: the seven pillars of RDoC , 2013, BMC Medicine.

[7]  B. Stoll,et al.  The transformation of child health research: innovation, market failure, and the public good. , 2013, JAMA.

[8]  Restoring science to the National Children's Study. , 2013, JAMA.

[9]  David W. Evans,et al.  Developmental brain dysfunction: revival and expansion of old concepts based on new genetic evidence , 2013, The Lancet Neurology.

[10]  W. Barbaresi,et al.  Mortality, ADHD, and Psychosocial Adversity in Adults With Childhood ADHD: A Prospective Study , 2013, Pediatrics.

[11]  D. Lawlor,et al.  Cohort Profile: The ‘Children of the 90s’—the index offspring of the Avon Longitudinal Study of Parents and Children , 2012, International journal of epidemiology.

[12]  B. Yawn,et al.  History of the Rochester Epidemiology Project: half a century of medical records linkage in a US population. , 2012, Mayo Clinic proceedings.

[13]  Scott M. Brue,et al.  Data resource profile: the Rochester Epidemiology Project (REP) medical records-linkage system. , 2012, International journal of epidemiology.

[14]  W. Barbaresi,et al.  Childhood ADHD is strongly associated with a broad range of psychiatric disorders during adolescence: a population-based birth cohort study. , 2012, Journal of child psychology and psychiatry, and allied disciplines.

[15]  H. Bauchner,et al.  Challenges to excellence in child health research: call for papers. , 2012, JAMA.

[16]  B. Yawn,et al.  Generalizability of epidemiological findings and public health decisions: an illustration from the Rochester Epidemiology Project. , 2012, Mayo Clinic proceedings.

[17]  P. Newacheck,et al.  A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations. , 2011, Academic pediatrics.

[18]  B. Yawn,et al.  American Journal of Epidemiology Practice of Epidemiology Use of a Medical Records Linkage System to Enumerate a Dynamic Population over Time: the Rochester Epidemiology Project , 2022 .

[19]  W. Barbaresi,et al.  Gender, Attention-Deficit/Hyperactivity Disorder, and Reading Disability in a Population-Based Birth Cohort , 2010, Pediatrics.

[20]  D. Lawlor,et al.  Birth cohort studies: past, present and future. , 2009, International journal of epidemiology.

[21]  W. Barbaresi,et al.  The Forgotten Learning Disability: Epidemiology of Written-Language Disorder in a Population-Based Birth Cohort (1976–1982), Rochester, Minnesota , 2009, Pediatrics.

[22]  C. Gillberg,et al.  What have birth cohort studies asked about genetic, pre- and perinatal exposures and child and adolescent onset mental health outcomes? A systematic review , 2009, European Child & Adolescent Psychiatry.

[23]  R. Baumann Capute and Accardo's Neurodevelopmental Disabilities in Infancy and Childhood. Third Edition. Volume I: Neurodevelopmental Diagnosis and Treatment; Volume II: The Spectrum of Neurodevelopmental Disabilities, Pasquale J. Accardo (Ed.). Paul H. Brookes Publishing Co, Baltimore, MD (2008), 822 pp, illu , 2008 .

[24]  W. Barbaresi,et al.  Developmental dissociation, deviance, and delay: Occurrence of attention-deficit-hyperactivity disorder in individuals with and without borderline-to-mild intellectual disability. , 2006, Developmental medicine and child neurology.

[25]  P. Magnus,et al.  Cohort profile: the Norwegian Mother and Child Cohort Study (MoBa). , 2006, International journal of epidemiology.

[26]  W. Barbaresi,et al.  Long-Term Stimulant Medication Treatment of Attention-Deficit/Hyperactivity Disorder: Results from a Population-Based Study , 2006, Journal of developmental and behavioral pediatrics : JDBP.

[27]  W. Barbaresi,et al.  Psychostimulant treatment and risk for substance abuse among young adults with a history of attention-deficit/hyperactivity disorder: a population-based, birth cohort study. , 2005, Journal of child and adolescent psychopharmacology.

[28]  W. Barbaresi,et al.  Math learning disorder: incidence in a population-based birth cohort, 1976-82, Rochester, Minn. , 2005, Ambulatory pediatrics : the official journal of the Ambulatory Pediatric Association.

[29]  W. Barbaresi,et al.  Case definition in epidemiologic studies of AD/HD. , 2004, Annals of epidemiology.

[30]  W. Barbaresi,et al.  Early life risk factors for attention-deficit/hyperactivity disorder: a population-based cohort study. , 2004, Mayo Clinic proceedings.

[31]  W. Barbaresi,et al.  How common is attention-deficit/hyperactivity disorder? Incidence in a population-based birth cohort in Rochester, Minn. , 2002, Archives of pediatrics & adolescent medicine.

[32]  D. Schaid,et al.  Incidence of reading disability in a population-based birth cohort, 1976-1982, Rochester, Minn. , 2001, Mayo Clinic proceedings.

[33]  W. Barbaresi,et al.  Boy/girl differences in risk for reading disability: potential clues? , 2001, American journal of epidemiology.

[34]  Henrik Toft Sørensen,et al.  The Danish National Birth Cohort - its background, structure and aim , 2001, Scandinavian journal of public health.

[35]  W. Barbaresi,et al.  Use and costs of medical care for children and adolescents with and without attention-deficit/hyperactivity disorder. , 2001, JAMA.

[36]  L. Melton,et al.  Potential effect of authorization bias on medical record research. , 1999, Mayo Clinic proceedings.

[37]  D. Schaid,et al.  Potential influence of migration bias in birth cohort studies. , 1998, Mayo Clinic proceedings.

[38]  B. Yawn,et al.  The impact of requiring patient authorization for use of data in medical records research. , 1998, The Journal of family practice.

[39]  L. Melton,et al.  History of the Rochester Epidemiology Project. , 1996, Mayo Clinic proceedings.

[40]  E. Bergstralh,et al.  Mental retardation in a birth cohort, 1976-1980, Rochester, Minnesota. , 1996, American journal of mental retardation : AJMR.

[41]  F. Liddell,et al.  The development of cohort studies in epidemiology: a review. , 1988, Journal of clinical epidemiology.

[42]  D. Sackett Bias in analytic research. , 1979, Journal of chronic diseases.

[43]  J. S. McCormick,et al.  Epidemiology—An Introductory Text , 1976 .

[44]  R. Picken The age selection of mortality from tuberculosis in successive decades , 1939 .

[45]  K. Andvord What can we learn by Studying Tuberculosis by Generations , 1930 .