The Autism Speaks Autism Treatment Network Registry Data: Opportunities for Investigators.

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

Pediatrics

journal_title

Pediatrics

authors

Murray DS,Fedele A,Shui A,Coury DL

doi

10.1542/peds.2015-2851E

subject

Has Abstract

pub_date

2016-02-01 00:00:00

pages

S72-8

eissn

0031-4005

issn

1098-4275

pii

peds.2015-2851E

journal_volume

137 Suppl 2

pub_type

杂志文章
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    更新日期:2006-09-01 00:00:00

  • Guidelines for pediatric cancer centers.

    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...

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    authors: Corrigan JJ,Feig SA,American Academy of Pediatrics.

    更新日期:2004-06-01 00:00:00

  • Dietary Fats and Atherosclerosis From Childhood to Adulthood.

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    pub_type: 杂志文章

    doi:

    authors: Paredes A,Wong P,Mason EO Jr,Taber LH,Barrett FF

    更新日期:1977-05-01 00:00:00

  • Severe renal osteodystrophy without elevated serum immunoreactive parathyroid hormone concentrations in hypomagnesemia due to renal magnesium wasting.

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    pub_type: 杂志文章

    doi:

    authors: Zelikovic I,Dabbagh S,Friedman AL,Goelzer ML,Chesney RW

    更新日期:1987-03-01 00:00:00

  • A randomized, clinical trial of a home safety intervention based in an emergency department setting.

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    更新日期:2004-06-01 00:00:00

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    更新日期:2006-12-01 00:00:00

  • Metabolic syndrome in childhood predicts adult cardiovascular disease 25 years later: the Princeton Lipid Research Clinics Follow-up Study.

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    更新日期:2007-08-01 00:00:00

  • Obesity at the onset of diabetes in an ethnically diverse population of children: what does it mean for epidemiologists and clinicians?

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    更新日期:2005-05-01 00:00:00

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    journal_title:Pediatrics

    pub_type: 杂志文章

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    更新日期:2014-01-01 00:00:00

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    journal_title:Pediatrics

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    doi:

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    更新日期:1992-06-01 00:00:00

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    journal_title:Pediatrics

    pub_type: 临床试验,杂志文章,随机对照试验

    doi:

    authors: Paneth N,Bell D,Stein RE

    更新日期:1979-03-01 00:00:00

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    authors: Irwin CE Jr,Cataldo MF,Matheny AP Jr,Peterson L

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    doi:

    authors: Gutgesell HP,Tacker WA,Geddes LA,Davis S,Lie JT,McNamara DG

    更新日期:1976-12-01 00:00:00

  • Growth of children on classical and medium-chain triglyceride ketogenic diets.

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    journal_title:Pediatrics

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    authors: Neal EG,Chaffe HM,Edwards N,Lawson MS,Schwartz RH,Cross JH

    更新日期:2008-08-01 00:00:00

  • Perspectives on obesity programs at children's hospitals: insights from senior program administrators.

    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

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    doi:10.1542/peds.2011-0480I

    authors: Eneli I,Norwood V,Hampl S,Ferris M,Hibbeln T,Patterson K,Pomietto M,Hassink S

    更新日期:2011-09-01 00:00:00

  • Global Climate Change and Children's Health.

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    journal_title:Pediatrics

    pub_type: 杂志文章

    doi:

    authors: Helbock HJ,Motchnik PA,Ames BN

    更新日期:1993-01-01 00:00:00

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    更新日期:2000-08-01 00:00:00

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    pub_type: 杂志文章

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    更新日期:2009-04-01 00:00:00

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    pub_type: 杂志文章

    doi:

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    更新日期:1982-07-01 00:00:00

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    pub_type: 杂志文章

    doi:

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    更新日期:2006-05-01 00:00:00

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    pub_type: 杂志文章

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    更新日期:2008-02-01 00:00:00

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    doi:

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    pub_type: 杂志文章

    doi:

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    doi:

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    doi:

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    doi:

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