Neuroinformatics

, Volume 10, Issue 4, pp 331–339

Sharing Heterogeneous Data: The National Database for Autism Research

  • Dan Hall
  • Michael F. Huerta
  • Matthew J. McAuliffe
  • Gregory K. Farber
Review

Abstract

The National Database for Autism Research (NDAR) is a secure research data repository designed to promote scientific data sharing and collaboration among autism spectrum disorder investigators. The goal of the project is to accelerate scientific discovery through data sharing, data harmonization, and the reporting of research results. Data from over 25,000 research participants are available to qualified investigators through the NDAR portal. Summary information about the available data is available to everyone through that portal.

Keywords

Autism Database Common data elements Unique subject identifier Data federation Data repository 

References

  1. Belmonte, M. K., Mazziotta, J. C., et al. (2008). Offering to share: how to put heads together in autism neuroimaging. Journal of Autism and Developmental Disorders, 38(1), 2–13.PubMedCrossRefGoogle Scholar
  2. Bidgood, W. D., Horii, S. C., et al. (1997). Understanding and using DICOM, the Data Interchange Standard for Biomedical Imaging. Journal of the American Medical Informatics Association, 4(3), 199–212.PubMedCrossRefGoogle Scholar
  3. Bjaalie, J. G. (2008). Understanding the brain through neuroinformatics. Frontiers in Neuroscience, 2(1), 19–21.PubMedCrossRefGoogle Scholar
  4. Brain Development Cooperative Group, & Evans, A. C. (2006). The NIH MRI Study of normal brain development. NeuroImage, 30, 184–202.PubMedCrossRefGoogle Scholar
  5. Chen, R., Jaio, Y., & Herskovits, E. H. (2011). Structural MRI in autism spectrum disorder. Pediatric Research, 69(5 Pt 2), 63R–68R.PubMedCrossRefGoogle Scholar
  6. Cox, R. W., Ashburner, J., et al. (2004). A (Sort of) new image data format standard: NifTI-1. Abstrace, 10th Annual Meeting of the Organization for Human Brain Mapping, June 13–17, Budapest, Hungary.Google Scholar
  7. Evans, A. E., & the Brain Development Cooperative Group. (2006). The NIH MRI Study of Normal Brain Development. NeuroImage, 30(1), 184–202.PubMedCrossRefGoogle Scholar
  8. Fernald, G. H., Capriotti, E., et al. (2011). Bioinformatics challenges for personalized medicine. Bioinformatics, 27(13), 1741–1748.PubMedCrossRefGoogle Scholar
  9. Fischbach, G. D., & Lord, C. (2010). The Simons Simplex Collection: a resource for identification of autism genetic risk factors. Neuron, 68, 192–195.PubMedCrossRefGoogle Scholar
  10. Friedman, L., Glover, G. H., et al. (2006). Reducing interscanner variability of activation in an multicenter fMRI Study: controlling for Signal-to-Fluctuation-Noise-Ratio (SFNR) differences. NeuroImage, 33(2), 471–481.PubMedCrossRefGoogle Scholar
  11. Gorrindo, P., Williams, K. C., et al. (2012). Gastrointestinal dysfunction in autism: parental report, clinical evaluation, and associated factors. Autism Research, 5(2), 101–108.PubMedCrossRefGoogle Scholar
  12. Haroutunian, V., & Pickett, J. (2007). Autism brain tissue banking. Brain Pathology, 17(4), 412–421.PubMedCrossRefGoogle Scholar
  13. Huerta, M. F., & Koslow, S. H. (1996). Neuroinformatics: opportunities across disciplinary and national borders. NeuroImage, 4(3), S4–S6.PubMedCrossRefGoogle Scholar
  14. Huerta, M. F., Liu, Y., et al. (2006). A view of the digital landscape for neuroscience at NIH. Neuroinformatics, 4(2), 131–137.PubMedCrossRefGoogle Scholar
  15. Johnson, S. B., Whitney, G., et al. (2010). Using global unique identifiers to link autism collections. Journal of the American Medical Informatics Association, 17(6), 689–695.PubMedCrossRefGoogle Scholar
  16. Kasari, C., & Lawton, K. (2010). New directions in behavioral treatment of autism spectrum disorders. Current Opinion in Neurology, 23(2), 137–143.PubMedCrossRefGoogle Scholar
  17. Lajonchere, C. M., & the AGRE Consortium. (2010). Changing the landscape of autism research: the autism genetic resource exchange. Neuron, 68, 187–191.PubMedCrossRefGoogle Scholar
  18. Law, M. Y. Y., & Liu, B. (2009). DICOM-RT and its utilization in radiation therapy. Radiographics, 29(3), 655–667.PubMedCrossRefGoogle Scholar
  19. MacKenzie-Graham, A. J., Van Horn, J. D., et al. (2008). Provenance in neuroimaging. NeuroImage, 42(1), 178–195.PubMedCrossRefGoogle Scholar
  20. McAuliffe, M. J., Lalonde, F. M., et al. (2001). Medical image processing, analysis & visualization in clinical research. 14th IEEE Symposium on Computer-Based Medical Systems (CBMS), 381–386.Google Scholar
  21. McPheeters, M. L., Warren, Z., et al. (2011). A systematic review of medical treatments for children with autism spectrum disorders. Pediatrics, 127(5), e1312–e1321.PubMedCrossRefGoogle Scholar
  22. Milham, M. P. (2012). Open neuroscience solutions for the connectome-wide association era. Neuron, 73(2), 214–218.PubMedCrossRefGoogle Scholar
  23. Mortamet, B., Bernstein, M. A., et al. (2009). Automatic quality assessment in structural brain magnetic resonance imaging. Magnetic Resonance in Medicine, 62(2), 365–372.PubMedCrossRefGoogle Scholar
  24. Patel, V., Dinov, I. D., et al. (2010). LONI MiND: metadata in NIfTI for DWI. NeuroImage, 51(2), 665–676.PubMedCrossRefGoogle Scholar
  25. Penagarikano, O., Abrahams, B. S., et al. (2011). Absence of CNTNAP2 leads to epilepsy, neuronal migration abnormalities, and core autism-related deficits. Cell, 147(1), 235–246.PubMedCrossRefGoogle Scholar
  26. Sansone, S. M., Widaman, K. F., et al. (2011). Psychometric study of the aberrant behavior checklist in fragile X syndrome and implications for targeted treatment. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-011-1370-2.
  27. Scherer, S. W., & Dawson, G. (2011). Risk factors for autism: translating genomic discoveries into diagnostics. Human Genetics, 130(1), 123–148.PubMedCrossRefGoogle Scholar
  28. Van Horn, J. D., & Ball, C. A. (2008). Domain-specific data sharing in neuroscience: what do we have to learn from each other? Neuroinform., 6(2), 117–121.CrossRefGoogle Scholar
  29. Weiner, M. W., Aisne, P. S., et al. (2010). The Alzheimer’s Disease neuroimaging initiative: progress report and future plans. Alzheimer’s & Dementia, 6(3), 202–211.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC (outside the USA) 2012

Authors and Affiliations

  • Dan Hall
    • 1
  • Michael F. Huerta
    • 2
  • Matthew J. McAuliffe
    • 3
  • Gregory K. Farber
    • 4
  1. 1.OMNITEC Solutions, Inc.RockvilleUSA
  2. 2.Office of Health Information Programs DevelopmentNational Library of MedicineBethesdaUSA
  3. 3.Center for Information TechnologyNational Institute of HealthBethesdaUSA
  4. 4.Office of Technology Development and CoordinationNational Institute of Mental Health, National Institutes of HealthRockvilleUSA

Personalised recommendations