Investigating the natural history and prognostic factors of ASD in children: the multicEntric Longitudinal study of childrEN with ASD - the ELENA study protocol (original) (raw)
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BMC psychiatry, 2017
Autism Spectrum Disorder (ASD) is a severe, lifelong neurodevelopmental disorder with early onset that places a heavy burden on affected individuals and their families. Due to the need for highly specialized health, educational and vocational services, ASD is a cost-intensive disorder, and strain on health care systems increases with increasing age of the affected individual. The ASD-Net will study Germany's largest cohort of patients with ASD over the lifespan. By combining methodological expertise from all levels of clinical research, the ASD-Net will follow a translational approach necessary to identify neurobiological pathways of different phenotypes and their appropriate identification and treatment. The work of the ASD-Net will be organized into three clusters concentrating on diagnostics, therapy and health economics. In the diagnostic cluster, data from a large, well-characterized sample (N = 2568) will be analyzed to improve the efficiency of diagnostic procedures. Patt...
A 16-Year Cohort Analysis of Autism Spectrum Disorder-Associated Morbidity in a Pediatric Population
Frontiers in Psychiatry, 2018
Introduction: This chapter presents the analysis of physician-diagnosed International Classification of Diseases (ICD version 9) disorders and diseases associated with autism spectrum disorders (ASD) in a 16-year pediatric cohort. Materials and Methods: The sample (n = 47,180; 62% male) consisted of children in the Alberta Health Services Calgary Health Region catchment under the age of 3 years, who received any physician-assigned ICD 9 diagnosis before the age of three between April 1993 and December 31, 1994. There were 111 females and 609 males with ASD diagnosed at any time between 1993 and 2010. The results detail the 16-year odds ratio (OR) associations of ASD diagnosis within the major classes of international classification of diseases (ICD 9) stratified by age and sex in the cohort. Further, for those suffering from ASD and any other disorder or disease, the analysis presents by sex, age, and duration, the proportions of all index physician-assigned ICD diagnoses, arising significantly before and after the index ASD diagnosis. Results: The rate of treated ASD in the cohort was 1 in 65 and the 16-year population rate of ASD was 62 per 10,000. For males with an ASD over the 16 year period, the ORs were significantly greater than the value one for 15 of the 17 main ICD classes and for 10 of the main ICD classes for females. Different age strata presented a more specific account of the main ICD class OR profiles. More specifically, 28 ICD disorders significantly preceded and 95 ICD disorders significantly followed ASD for females. Thirty-eight ICD disorders significantly preceded and 234 ICD disorders significantly followed ASD for males. Conclusions: The results largely confirm past studies focusing on more constrained sets of ASD morbidity. The age-stratified ORs gauge the order of risk in time for the cohort. The proportions of specific ICD disorders arising before and after ASD may be useful in respect to informing basic ASD research and ASD clinical management. Limitations are discussed.
The epidemiology of autism spectrum disorder and factors contributing to the increase in its prevalence, 2022
Autism spectrum disorder (ASD) is a multifactorial neurodevelopmental disorder which has attracted the interest of researchers in many scientific fields. The prevalence of a disease or a disorder is important for healthcare and socioeconomic reasons. According to the World Health Organization (WHO), currently, 1 in 160 children is born with ASD (0.63%), possibly a conservative estimate, as many studies have reported a prevalence higher than 1%. Even so, the WHO rate is approximately 14 times higher than that reported in the first epidemiological study on ASD, which was conducted in the UK 50 years ago. It is currently estimated that approximately 60 million people worldwide have ASD. Diagnosis and documentation of these individuals is challenging, due to the nature of the disorder and its broad spectrum. Many countries have no epidemiological data on ASD and several epidemiological studies on ASD record significant methodological limitations, but the currently available data indicate that the prevalence of ASD has risen over the years. The interpretation of this trend remains uncertain, but several factors have been documented that may have contributed to this apparent increase, including revision of the diagnostic criteria, overdiagnosis, scientific advances, accessibility to services, increase in social awareness, and improvement in the methodology applied in the epidemiological studies, in addition to environmental and other factors.
Early Predictors of ASD in Young Children Using a Nationally Representative Data Set
Journal of Early Intervention, 2013
Current clinical diagnosis of Autism Spectrum Disorders (ASD) occurs between 3 and 4 years of age, but increasing evidence indicates that intervention begun earlier may improve outcomes. Using secondary analysis of the Early Childhood Longitudinal Study–Birth Cohort data set, the current study identifies early predictors prior to the diagnosis of ASD at 4 years for approximately 100 children. Children with ASD were compared with children with other disabilities and children who were typically developing. Multinomial logistic regression analyses identified limited unique characteristics (e.g., self-regulation and sleep patterns) at the 9-month time point. A majority of the differences in communication and language, mental/cognitive function, motor function, social interaction, and self-regulation were found at the 2-year time point. Implications for research and practice are presented.
AUTISM SPECTRUM DISORDER IN CHILDHOOD AND ITS PROGNOSTIC FACTORS (Atena Editora)
AUTISM SPECTRUM DISORDER IN CHILDHOOD AND ITS PROGNOSTIC FACTORS (Atena Editora), 2023
Objective: Perform the analysis and review of available articles on the identification of autism in childhood and its prognostic factors. Methodology: The study consists of a literature review carried out with review articles published between 2015 and 2023, based on data collection in the scientific databases Scientific Electronic Library Online (SciELO), Google Scholar and LILACS. Results: 06 articles had the eligibility criteria for the theme and were used to compose the review. Studies have shown that there are alternative therapeutic options that favor the prognosis of ASD in terms of improving children's cognitive and social development. Thus, it is extremely important to carry out an early diagnosis of ASD linked to multidisciplinary support, guaranteeing comprehensive care. However, studies point out that there is still a lack of investment in studies that better elucidate the mechanisms and benefits of therapeutic alternatives, making them viable and accessible to children with ASD and their caregivers. Conclusion: ASD can be diagnosed early and addressed in such a way that there is a good prognosis in the child development of these patients. However, for this it is necessary that more studies be carried out to deepen the alternative therapies that already exist in order to potentiate them and make them a safe and effective option in the consolidation of the individual care of children with ASD.
The Autism Birth Cohort (ABC):a study of autism spectrum disorders in MoBa
Norsk Epidemiologi, 2014
Background: Autism spectrum disorders (ASDs) are characterized by persistent deficits in social communication and interaction and restricted, repetitive patterns of behavior, interests or activities. In most cases, the cause of ASD is likely to be a combination of genetic predisposition and environmental exposures occurring in fetal life or early infancy. Consequently, a prospective pregnancy cohort like MoBa represents an ideal platform for studies of ASDs in children. Methods: The Autism Birth Cohort (ABC) Study has identified potential ASD cases in MoBa through questionnaire-based screening, parental and professional referrals, and linkages to the Norwegian Patient Register. ASD diagnoses have been ascertained through in-person clinical assessments and medical record reviews. Current results: By the end of 2012, the ABC Study had identified 518 ASD cases in MoBa. The ASD prevalence in school-age children is 0.7-0.8%, which is in line with nationwide estimates for Norway. The most important source of ASD case identification was registry linkages, while only a minority was detected through early screening. Published findings show that screening at 18 months misses the majority of ASD cases. Analyses of risk factors for ASDs have shown that maternal use of folic acid supplements in early pregnancy may lower the child's risk of developing ASDs and that paternal obesity appears to increase the child's risk of ASDs. Future plans: ASD case identification will continue through annual registry linkages and subsequent reviews of medical records. Analyses of plasma samples and RNA samples will be conducted to investigate prenatal and perinatal microbial exposures, innate immune and inflammatory responses, biomarkers of autism risk, and exposures to xenobiotics. Analyses of deciduous teeth will also investigate the effect of medications and environmental toxins. Exome sequencing of DNA from ASD cases and their parents is ongoing, and will elucidate the role of de novo DNA mutations in the pathogenesis of ASDs. Future epidemiological analyses will explore the results of the 36-month screening for ASDs, the diagnostic stability and developmental trajectories in ASD children, and psychiatric and medical comorbidities in ASDs. This is an open access article distributed under the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. PURPOSE OF THE ARTICLE The purpose of this article is to describe the Autism Birth Cohort (ABC) Study, the sub-study of autism spectrum disorders (ASDs) in MoBa. We start by providing background information about ASDs, as this is necessary to explain why a prospective pregnancy cohort is an excellent platform for studies of ASDs in children. We then describe how the ABC Study has been managed and conducted, what the current results are, and what plans we have for the future of the study.
Medical Conditions in the First Years of Life Associated with Future Diagnosis of ASD in Children
Journal of autism and developmental disorders, 2017
This study examines medical conditions diagnosed prior to the diagnosis of autism spectrum disorder (ASD). Using a matched case control design with 3911 ASD cases and 38,609 controls, we found that 38 out of 79 medical conditions were associated with increased ASD risk. Developmental delay, mental health, and neurology conditions had the strongest associations (ORs 2.0-23.3). Moderately strong associations were observed for nutrition, genetic, ear nose and throat, and sleep conditions (ORs 2.1-3.2). Using machine learning methods, we clustered children based on their medical conditions prior to ASD diagnosis and demonstrated ASD risk stratification. Our findings provide new evidence indicating that children with ASD have a disproportionate burden of certain medical conditions preceding ASD diagnosis.
The EU-AIMS Longitudinal European Autism Project (LEAP): clinical characterisation
Background: The EU-AIMS Longitudinal European Autism Project (LEAP) is to date the largest multi-centre, multidisciplinary observational study on biomarkers for autism spectrum disorder (ASD). The current paper describes the clinical characteristics of the LEAP cohort and examines age, sex and IQ differences in ASD core symptoms and common co-occurring psychiatric symptoms. A companion paper describes the overall design and experimental protocol and outlines the strategy to identify stratification biomarkers. Methods: From six research centres in four European countries, we recruited 437 children and adults with ASD and 300 controls between the ages of 6 and 30 years with IQs varying between 50 and 148. We conducted in-depth clinical characterisation including a wide range of observational, interview and questionnaire measures of the ASD phenotype, as well as co-occurring psychiatric symptoms. Results: The cohort showed heterogeneity in ASD symptom presentation, with only minimal to moderate site differences on core clinical and cognitive measures. On both parent-report interview and questionnaire measures, ASD symptom severity was lower in adults compared to children and adolescents. The precise pattern of differences varied across measures, but there was some evidence of both lower social symptoms and lower repetitive behaviour severity in adults. Males had higher ASD symptom scores than females on clinician-rated and parent interview diagnostic measures but not on parent-reported dimensional measures of ASD symptoms. In contrast, self-reported ASD symptom severity was higher in adults compared to adolescents, and in adult females compared to males. Higher scores on ASD symptom measures were moderately associated with lower IQ. Both inattentive and hyperactive/impulsive ADHD symptoms were lower in adults than in children and adolescents, and males with ASD had higher levels of inattentive and hyperactive/ impulsive ADHD symptoms than females.