Abstract:
OBJECTIVE:Patient registries can effectively collect data over a long period of time to provide a better understanding of the typical presentation of specific conditions. The autism spectrum disorders (ASDs) have experienced a marked increase in reported prevalence over the past 20 years for reasons that are not completely clear. The Autism Treatment Network (ATN) Registry was established to facilitate investigations into a variety of questions critical to expanding our understanding of ASDs. Here we describe the establishment of the registry, its components, some of its findings to date, and opportunities for further use of this data. METHODS:Participants are eligible for enrollment into the ATN registry if they are between the ages of 2.0 and 17.6 years at the time of enrollment and meet criteria for ASD as determined by clinical consensus on the basis of specific diagnostic measures (Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule, Second Edition; Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition/Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition). Baseline measures include demographics, autism assessment, cognitive assessment data, behavioral data, sleep habits, quality of life, sensory data, and treatments. Several of the measures are collected at annual follow-up visits. RESULTS:More than 6800 children with ASD have been enrolled in the Autism Speaks ATN registry. Data from the registry have been reported at numerous scientific meetings and in several publications and have led to new recommendations for best practices in the management of ASD. CONCLUSIONS:A patient registry for children and adolescents with ASD has had and will continue to have a significant impact on care for this population. Investigators are encouraged to query this database to further its impact by testing novel hypotheses and conducting preliminary proof-of-concept analyses.
journal_name
Pediatricsjournal_title
Pediatricsauthors
Murray DS,Fedele A,Shui A,Coury DLdoi
10.1542/peds.2015-2851Esubject
Has Abstractpub_date
2016-02-01 00:00:00pages
S72-8eissn
0031-4005issn
1098-4275pii
peds.2015-2851Ejournal_volume
137 Suppl 2pub_type
杂志文章相关文献
PEDIATRICS文献大全abstract:OBJECTIVE:Cardiac arrest is uncommon among pediatric patients. Prehospital data demonstrate differences in care processes between children and adults receiving cardiopulmonary resuscitation and advanced life support. We sought to evaluate whether children receiving in-hospital cardiopulmonary resuscitation would attain...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2006-0453
更新日期:2006-09-01 00:00:00
abstract::Since the American Academy of Pediatrics published guidelines for pediatric cancer centers in 1986 and 1997, significant changes in the delivery of health care have prompted a review of the role of tertiary medical centers in the care of pediatric patients. The potential effect of these changes on the treatment and su...
journal_title:Pediatrics
pub_type: 指南,杂志文章
doi:10.1542/peds.113.6.1833
更新日期:2004-06-01 00:00:00
abstract:BACKGROUND:The association of dietary fat distribution with markers of subclinical atherosclerosis during early life is unknown. We examined whether success in achieving the main target of an infancy-onset dietary intervention based on the distribution of dietary fat was associated with aortic and carotid intima-media ...
journal_title:Pediatrics
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1542/peds.2019-2786
更新日期:2020-04-01 00:00:00
abstract::Group B streptococcal colonization of normal newborn infants increased from 22.5% within 20 hours of birth to 65.4% at the time of hospital discharge (P less than .001). In contrast, colonization in mothers did not change significantly between the time of admission to labor and delivery (27.7%) and the time of dischar...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1977-05-01 00:00:00
abstract::An 8 1/2-year-old girl presented with a long history of seizures, growth retardation, muscle weakness, gait disturbance, and hearing loss. Her evaluation revealed chronic moderate renal failure (serum creatinine 2.2 mg/dL), severe hypocalcemia (5 mg/dL), hyperphosphatemia (8.1 mg/dL), hypomagnesemia (1.5 mg/dL), incre...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1987-03-01 00:00:00
abstract:OBJECTIVE:To assess the effectiveness of an emergency department (ED)-based home safety intervention on caregivers' behaviors and practices related to home safety. METHODS:We conducted a randomized, clinical trial of 96 consecutive caregivers of children who were younger than 5 years and presented to an urban pediatri...
journal_title:Pediatrics
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1542/peds.113.6.1603
更新日期:2004-06-01 00:00:00
abstract:OBJECTIVES:The purpose of this work was to identify barriers to physical activity in children with asthma and to compare their customary activity levels, BMI and emotional well-being with that of children with other medical conditions. It was hypothesized that children with asthma would have higher BMI and lower levels...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2006-1846
更新日期:2006-12-01 00:00:00
abstract:OBJECTIVE:The goal was to assess the association of metabolic syndrome in childhood with adult cardiovascular disease 25 years later. METHODS:Data from the National Heart, Lung, and Blood Institute Lipid Research Clinics Princeton Prevalence Study (1973-1976) and the Princeton Follow-up Study (2000-2004) were used. BM...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2006-1699
更新日期:2007-08-01 00:00:00
abstract:OBJECTIVE:It is often difficult to determine the pathophysiology of childhood diabetes at onset, particularly in overweight children, because obesity has been associated with both type 1 and type 2 diabetes. We compared children at the diagnosis of diabetes in a multiethnic population-based registry to understand the e...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2004-1448
更新日期:2005-05-01 00:00:00
abstract:OBJECTIVE:Bronchiolitis is a major cause of infant morbidity and contributes to millions of dollars in health care costs. Care guidelines may cut costs by reducing unnecessary resource utilization. Through the implementation of a guideline, we sought to reduce unnecessary resource utilization and improve the value of c...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2013-1991
更新日期:2014-01-01 00:00:00
abstract::Extracorporeal piezoelectric lithotripsy is an effective method for treating renal pelvic stones in children. Treatment with the Wolf lithotriptor is essentially painless and can be performed without anesthesia on an outpatient basis. Real-time ultrasound is used to localize stones. In a 1-year period at the Universit...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1992-06-01 00:00:00
abstract::The impact of a system of primary pediatric care on emergency room use in a municipal hospital was measured by comparing that use in two randomly selected populations. The population that was offered participation in a primary care program consistently used the emergency room less than did the control group. Analysis ...
journal_title:Pediatrics
pub_type: 临床试验,杂志文章,随机对照试验
doi:
更新日期:1979-03-01 00:00:00
abstract::Lymphatic malformations (LMs) are congenital lymphatic lesions that impose significant and costly morbidities on affected patients. Treatment options are limited due to incomplete understanding of LM pathobiology. Expression of an activated β2-adrenergic receptor has been described in LM tissue, suggesting that this p...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2015-4545
更新日期:2016-09-01 00:00:00
abstract::Injury is the third leading cause of death in the United States and the leading cause for children, adolescents, and young adults. Injury results from multiple factors and so may its prevention. The first and simplest approach toward preventing injuries has been to innovatively and aggressively apply a traditional pub...
journal_title:Pediatrics
pub_type: 杂志文章,评审
doi:
更新日期:1992-11-01 00:00:00
abstract::Transthoracic direct current shock is the recommended treatment for ventricular fibrillation in children as in adults. To determine the appropriate energy dose, data were collected from 71 defibrillation attempts in 27 children. Sixty-three of the 71 shocks (89%) were successful in terminating fibrillation. Fifty-seve...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1976-12-01 00:00:00
abstract:OBJECTIVE:The objectives of this study were to examine growth in children on classical and medium-chain triglyceride ketogenic diets and to investigate any association between growth and calorie or protein intake. METHODS:Weight, height, and BMI z scores were recorded for children who were initiated on 1 of 2 ketogeni...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2007-2410
更新日期:2008-08-01 00:00:00
abstract:OBJECTIVE:The obesity epidemic has resulted in an increasing number of children needing multidisciplinary obesity treatment. To meet this need, pediatric obesity programs have arisen, particularly in children's hospitals. In 2008, the National Association of Children's Hospitals and Related Institutions (NACHRI) conven...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2011-0480I
更新日期:2011-09-01 00:00:00
abstract::Rising global temperatures are causing major physical, chemical, and ecological changes in the planet. There is wide consensus among scientific organizations and climatologists that these broad effects, known as "climate change," are the result of contemporary human activity. Climate change poses threats to human heal...
journal_title:Pediatrics
pub_type: 指南,杂志文章
doi:10.1542/peds.2015-3232
更新日期:2015-11-01 00:00:00
abstract::The unsaturated fatty acids that make up a large component of the lipid emulsion Intralipid are highly susceptible to peroxidation, and the products of this reaction could explain the toxicity that has been associated with the administration of some emulsions. Lipid peroxidation produces hydroperoxides, which can alte...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1993-01-01 00:00:00
abstract::Pneumococcal infections are the most common invasive bacterial infections in children in the United States. The incidence of invasive pneumococcal infections peaks in children younger than 2 years, reaching rates of 228/100,000 in children 6 to 12 months old. Children with functional or anatomic asplenia (including si...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.106.2.367
更新日期:2000-08-01 00:00:00
abstract:OBJECTIVES:Unsolicited reports regarding potentially serious adverse drug reactions in neonates and young infants were reported to the Food and Drug Administration, leading to changes in the package label for ceftriaxone. This report describes and summarizes the reported cases that led to safety concerns regarding the ...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2008-3080
更新日期:2009-04-01 00:00:00
abstract::A newborn with graft-vs-host (GVH) disease following an exchange transfusion was treated by attempting to eradicate the incompatible graft and to reconstitute the child hematologically and immunologically with a bone marrow transplant. The patient was a female term infant (blood group B, Rh+ Coombs test positive) who ...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1982-07-01 00:00:00
abstract::In an effort to determine whether iron deficiency, in the absence of anemia (hemoglobin greater than 11.0 g/dL), might produce alterations in behavioral development, four groups of nonanemic infants, 9 to 12 months of age, with varying degrees of iron deficiency were studied. Infants were classified as iron sufficient...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1983-06-01 00:00:00
abstract::This publication contains the pediatric and neonatal sections of the 2005 International Consensus on Cardiopulmonary Resuscitation and Emergency Cardiovascular Care Science With Treatment Recommendations (COSTR). The consensus process that produced this document was sponsored by the International Liaison Committee on ...
journal_title:Pediatrics
pub_type: 杂志文章,实务指引
doi:10.1542/peds.2006-0206
更新日期:2006-05-01 00:00:00
abstract:OBJECTIVE:We compared the development of adverse neurodevelopmental outcomes at corrected ages of 18 to 22 months for extremely low birth weight infants exposed prenatally to dexamethasone, betamethasone, or no steroid. METHODS:Study infants were extremely low birth weight (401-1000 g) infants who were in the care of ...
journal_title:Pediatrics
pub_type: 杂志文章
doi:10.1542/peds.2007-1103
更新日期:2008-02-01 00:00:00
abstract::Data from 442 children, aged 2 to 5, who were participants in the 1987-1988 Nationwide Food Consumption Survey, were examined to determine the effect of maternal employment on the quality of their diets. Diet quality was assessed by examining nutrient adequacy and nutrient overconsumption using the 3-day average of on...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1992-08-01 00:00:00
abstract:OBJECTIVE:To determine whether upper airway resistance syndrome (UARS) can be recognized and distinguished from obstructive sleep apnea syndrome (OSAS) in prepubertal children based on clinical evaluations, and, in a subgroup of the population, to compare the efficacy of esophageal pressure (Pes) monitoring to that of ...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1996-11-01 00:00:00
abstract::An experimental study was designed to help parents cope with the implications of the diagnosis of congenital heart disease. Intervention strategies involving clarification of medical information, discussion of psychological issues, and a combination of the two, were more effective than no intervention in helping paren...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1977-02-01 00:00:00
abstract::The effect of body position (supine v prone) on energy expenditure and behavior of 42 healthy low birth weight (920 to 1,760 g) infants was evaluated in 66 studies. Each infant was randomly assigned to the supine or prone position for the first three-hour epoch; the position was reversed for the second three-hour epoc...
journal_title:Pediatrics
pub_type: 临床试验,杂志文章,随机对照试验
doi:
更新日期:1987-11-01 00:00:00
abstract::There is considerable literature dealing with the responsibilities of clinical department chairmen, which primarily emphasizes the importance of developing a sound and facilitating administration. This is dependent on the hiring of appropriate support personnel, developing a representative committee structure, being a...
journal_title:Pediatrics
pub_type: 杂志文章
doi:
更新日期:1992-07-01 00:00:00