Frontiers in Medicine (Oct 2016)

Distributed cognition and process management enabling individualized translational research: The NIH Undiagnosed Diseases Program experience

  • Amanda E Links,
  • David Draper,
  • Elizabeth Lee,
  • Jessica Guzman,
  • Zaheer Valivullah,
  • Valerie Maduro,
  • Vlad Lebedev,
  • Maxim Didenko,
  • Garrick Tomlin,
  • Michael Brudno,
  • Marta Girdea,
  • Sergiu Dumitriu,
  • Andrew M Arnold,
  • Bert Coessens,
  • Steven Verhoeven,
  • William Bone,
  • David Adams,
  • Cornelius F Boerkoel,
  • William A Gahl,
  • Murat Sincan

DOI
https://doi.org/10.3389/fmed.2016.00039
Journal volume & issue
Vol. 3

Abstract

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The National Institutes of Health Undiagnosed Diseases Program (NIH UDP) applies translational research systematically to diagnose patients with undiagnosed diseases. The challenge is to implement an information system enabling scalable translational research. The authors hypothesized that similarly complex problems are resolvable through process management and the distributed cognition of communities. The team therefore built the NIH UDP Integrated Collaboration System (UDPICS) to form virtual collaborative multidisciplinary research networks or communities. UDPICS supports these communities through integrated process management, ontology-based phenotyping, biospecimen management, cloud-based genomic analysis, and an electronic laboratory notebook. UDPICS provided a mechanism for efficient, transparent, and scalable translational research and thereby addressed many of the complex and diverse research and logistical problems of the NIH UDP. Full definition of the strengths and deficiencies of UDPICS will require formal qualitative and quantitative usability and process improvement measurement.

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