Abstract
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.
Highlights
Established in 2008, the National Institutes of Health (NIH) undiagnosed diseases program (UDP) provides answers to patients with conditions that have eluded diagnosis and advances medical knowledge about rare and common diseases (1)
We hypothesized that integration of process management with distributed cognition (4) addresses the National Institutes of Health Undiagnosed Diseases Program (NIH UDP) information system requirements
Our review of open source and commercial software packages, including electronic data capture (EDC) systems, clinical trial management systems (CTMS), collaboration systems, and laboratory information management systems (LIMS), showed that none had all the required features or had the upper level production management needed for translational research as envisioned for the NIH UDP (6, 7)
Summary
Established in 2008, the National Institutes of Health (NIH) undiagnosed diseases program (UDP) provides answers to patients with conditions that have eluded diagnosis and advances medical knowledge about rare and common diseases (1). We hypothesized that integration of process management with distributed cognition (4) addresses the NIH UDP information system requirements.
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