TY - JOUR
T1 - Distributed cognition and process management enabling individualized translational research
T2 - The NIH undiagnosed diseases program experience
AU - Links, Amanda E.
AU - Draper, David
AU - Lee, Elizabeth
AU - Guzman, Jessica
AU - Valivullah, Zaheer
AU - Maduro, Valerie
AU - Lebedev, Vlad
AU - Didenko, Maxim
AU - Tomlin, Garrick
AU - Brudno, Michael
AU - Girdea, Marta
AU - Dumitriu, Sergiu
AU - Haendel, Melissa A.
AU - Mungall, Christopher J.
AU - Smedley, Damian
AU - Hochheiser, Harry
AU - Arnold, Andrew M.
AU - Coessens, Bert
AU - Verhoeven, Steven
AU - Bone, William
AU - Adams, David
AU - Boerkoel, Cornelius F.
AU - Gahl, William A.
AU - Sincan, Murat
N1 - Publisher Copyright:
© 2016 Links, Draper, Lee, Guzman, Valivullah, Maduro, Lebedev, Didenko, Tomlin, Brudno, Girdea, Dumitriu, Haendel, Mungall, Smedley, Hochheiser, Arnold, Coessens, Verhoeven, Bone, Adams, Boerkoel, Gahl and Sincan.
PY - 2016
Y1 - 2016
N2 - 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 similar 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.
AB - 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 similar 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.
KW - Information system
KW - Ontology-based phenotyping
KW - Precision medicine
KW - Process management system
KW - Translational research
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U2 - 10.3389/fmed.2016.00039
DO - 10.3389/fmed.2016.00039
M3 - Article
AN - SCOPUS:85062641701
SN - 2296-858X
VL - 3
JO - Frontiers in Medicine
JF - Frontiers in Medicine
IS - OCT
M1 - 39
ER -