Literature DB >> 26446859

National Database for Autism Research (NDAR): Big Data Opportunities for Health Services Research and Health Technology Assessment.

Nalin Payakachat1, J Mick Tilford2,3, Wendy J Ungar4,5.   

Abstract

The National Database for Autism Research (NDAR) is a US National Institutes of Health (NIH)-funded research data repository created by integrating heterogeneous datasets through data sharing agreements between autism researchers and the NIH. To date, NDAR is considered the largest neuroscience and genomic data repository for autism research. In addition to biomedical data, NDAR contains a large collection of clinical and behavioral assessments and health outcomes from novel interventions. Importantly, NDAR has a global unique patient identifier that can be linked to aggregated individual-level data for hypothesis generation and testing, and for replicating research findings. As such, NDAR promotes collaboration and maximizes public investment in the original data collection. As screening and diagnostic technologies as well as interventions for children with autism are expensive, health services research (HSR) and health technology assessment (HTA) are needed to generate more evidence to facilitate implementation when warranted. This article describes NDAR and explains its value to health services researchers and decision scientists interested in autism and other mental health conditions. We provide a description of the scope and structure of NDAR and illustrate how data are likely to grow over time and become available for HSR and HTA.

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Year:  2016        PMID: 26446859      PMCID: PMC4761298          DOI: 10.1007/s40273-015-0331-6

Source DB:  PubMed          Journal:  Pharmacoeconomics        ISSN: 1170-7690            Impact factor:   4.981


  26 in total

Review 1.  Sharing heterogeneous data: the national database for autism research.

Authors:  Dan Hall; Michael F Huerta; Matthew J McAuliffe; Gregory K Farber
Journal:  Neuroinformatics       Date:  2012-10

2.  ASD, a psychiatric disorder, or both? Psychiatric diagnoses in adolescents with high-functioning ASD.

Authors:  Carla A Mazefsky; Donald P Oswald; Taylor N Day; Shaun M Eack; Nancy J Minshew; Janet E Lainhart
Journal:  J Clin Child Adolesc Psychol       Date:  2012-05-29

3.  Practice-based research--"Blue Highways" on the NIH roadmap.

Authors:  John M Westfall; James Mold; Lyle Fagnan
Journal:  JAMA       Date:  2007-01-24       Impact factor: 56.272

4.  The motivation for very early intervention for infants at high risk for autism spectrum disorders.

Authors:  Sara Jane Webb; Emily J H Jones; Jean Kelly; Geraldine Dawson
Journal:  Int J Speech Lang Pathol       Date:  2014-02       Impact factor: 2.484

5.  Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model.

Authors:  Geraldine Dawson; Sally Rogers; Jeffrey Munson; Milani Smith; Jamie Winter; Jessica Greenson; Amy Donaldson; Jennifer Varley
Journal:  Pediatrics       Date:  2009-11-30       Impact factor: 7.124

Review 6.  Cochrane review: social skills groups for people aged 6 to 21 with autism spectrum disorders (ASD).

Authors:  Brian Reichow; Amanda M Steiner; Fred Volkmar
Journal:  Evid Based Child Health       Date:  2013-03-07

7.  Economic burden of childhood autism spectrum disorders.

Authors:  Tara A Lavelle; Milton C Weinstein; Joseph P Newhouse; Kerim Munir; Karen A Kuhlthau; Lisa A Prosser
Journal:  Pediatrics       Date:  2014-02-10       Impact factor: 7.124

Review 8.  DSM-5 and RDoC: progress in psychiatry research?

Authors:  B J Casey; Nick Craddock; Bruce N Cuthbert; Steven E Hyman; Francis S Lee; Kerry J Ressler
Journal:  Nat Rev Neurosci       Date:  2013-11       Impact factor: 34.870

9.  The contribution of de novo coding mutations to autism spectrum disorder.

Authors:  Ivan Iossifov; Brian J O'Roak; Stephan J Sanders; Michael Ronemus; Niklas Krumm; Dan Levy; Holly A Stessman; Kali T Witherspoon; Laura Vives; Karynne E Patterson; Joshua D Smith; Bryan Paeper; Deborah A Nickerson; Jeanselle Dea; Shan Dong; Luis E Gonzalez; Jeffrey D Mandell; Shrikant M Mane; Michael T Murtha; Catherine A Sullivan; Michael F Walker; Zainulabedin Waqar; Liping Wei; A Jeremy Willsey; Boris Yamrom; Yoon-ha Lee; Ewa Grabowska; Ertugrul Dalkic; Zihua Wang; Steven Marks; Peter Andrews; Anthony Leotta; Jude Kendall; Inessa Hakker; Julie Rosenbaum; Beicong Ma; Linda Rodgers; Jennifer Troge; Giuseppe Narzisi; Seungtai Yoon; Michael C Schatz; Kenny Ye; W Richard McCombie; Jay Shendure; Evan E Eichler; Matthew W State; Michael Wigler
Journal:  Nature       Date:  2014-10-29       Impact factor: 69.504

10.  The autism brain imaging data exchange: towards a large-scale evaluation of the intrinsic brain architecture in autism.

Authors:  A Di Martino; C-G Yan; Q Li; E Denio; F X Castellanos; K Alaerts; J S Anderson; M Assaf; S Y Bookheimer; M Dapretto; B Deen; S Delmonte; I Dinstein; B Ertl-Wagner; D A Fair; L Gallagher; D P Kennedy; C L Keown; C Keysers; J E Lainhart; C Lord; B Luna; V Menon; N J Minshew; C S Monk; S Mueller; R-A Müller; M B Nebel; J T Nigg; K O'Hearn; K A Pelphrey; S J Peltier; J D Rudie; S Sunaert; M Thioux; J M Tyszka; L Q Uddin; J S Verhoeven; N Wenderoth; J L Wiggins; S H Mostofsky; M P Milham
Journal:  Mol Psychiatry       Date:  2013-06-18       Impact factor: 15.992

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  27 in total

1.  Brief Report: The Negev Hospital-University-Based (HUB) Autism Database.

Authors:  Gal Meiri; Ilan Dinstein; Analya Michaelowski; Hagit Flusser; Michal Ilan; Michal Faroy; Asif Bar-Sinai; Liora Manelis; Dana Stolowicz; Lili Lea Yosef; Nadav Davidovitch; Hava Golan; Shosh Arbelle; Idan Menashe
Journal:  J Autism Dev Disord       Date:  2017-09

2.  A Longitudinal MRI Study of Amygdala and Hippocampal Subfields for Infants with Risk of Autism.

Authors:  Guannan Li; Meng-Hsiang Chen; Gang Li; Di Wu; Chunfeng Lian; Quansen Sun; Dinggang Shen; Li Wang
Journal:  Graph Learn Med Imaging (2019)       Date:  2019-11-14

Review 3.  Towards a Multivariate Biomarker-Based Diagnosis of Autism Spectrum Disorder: Review and Discussion of Recent Advancements.

Authors:  Troy Vargason; Genevieve Grivas; Kathryn L Hollowood-Jones; Juergen Hahn
Journal:  Semin Pediatr Neurol       Date:  2020-03-05       Impact factor: 1.636

Review 4.  A Systematic Review of Techniques and Sources of Big Data in the Healthcare Sector.

Authors:  Susel Góngora Alonso; Isabel de la Torre Díez; Joel J P C Rodrigues; Sofiane Hamrioui; Miguel López-Coronado
Journal:  J Med Syst       Date:  2017-10-14       Impact factor: 4.460

5.  A PRELIMINARY VOLUMETRIC MRI STUDY OF AMYGDALA AND HIPPOCAMPAL SUBFIELDS IN AUTISM DURING INFANCY.

Authors:  Guannan Li; Meng-Hsiang Chen; Gang Li; Di Wu; Quansen Sun; Dinggang Shen; Li Wang
Journal:  Proc IEEE Int Symp Biomed Imaging       Date:  2019-07-11

6.  Data Dissemination: Shortening the Long Tail of Traumatic Brain Injury Dark Data.

Authors:  Bridget E Hawkins; J Russell Huie; Carlos Almeida; Jiapei Chen; Adam R Ferguson
Journal:  J Neurotrauma       Date:  2019-03-29       Impact factor: 5.269

7.  Early Diagnosis of Autism Disease by Multi-channel CNNs.

Authors:  Guannan Li; Mingxia Liu; Quansen Sun; Dinggang Shen; Li Wang
Journal:  Mach Learn Med Imaging       Date:  2018-09-15

8.  Characterizing the early vocabulary profiles of preverbal and minimally verbal children with autism spectrum disorder.

Authors:  Eileen Haebig; Eva Jiménez; Christopher R Cox; Thomas T Hills
Journal:  Autism       Date:  2020-11-27

Review 9.  Big data sharing and analysis to advance research in post-traumatic epilepsy.

Authors:  Dominique Duncan; Paul Vespa; Asla Pitkänen; Adebayo Braimah; Niina Lapinlampi; Arthur W Toga
Journal:  Neurobiol Dis       Date:  2018-06-01       Impact factor: 5.996

10.  Bridging the Brain and Data Sciences.

Authors:  John Darrell Van Horn
Journal:  Big Data       Date:  2020-11-18       Impact factor: 4.426

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