The Undiagnosed Diseases Program Integrated Collaboration System (Udpics)

One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families

Bibliographic Data

ID15719484
AuthorsJessica Guzman (National Institutes of Health), Elizabeth Lee (0000-0001-5404-1447, National Institutes of Health), David Draper (0000-0002-6367-3101, National Institutes of Health), David D Draper (National Institutes of Health), Zaheer M Valivullah (0000-0002-6843-3465, National Institutes of Health), Zaheer Valivullah (National Institutes of Health), Guoyun Yu (National Institutes of Health), Murat Sincan (0000-0003-1630-1353, National Institute of Dental and Craniofacial Research), William A Gahl (0000-0002-2494-6752, National Institutes of Health), William Gahl (National Institutes of Health), David Adams (0000-0002-5479-0007, National Institutes of Health), DAVID R ADAMS (0000-0002-6660-1242, National Institutes of Health, corresponding author)
Year2015
Volume2
Issue3
Pages342-357
Publication date2015-07-31
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueChildren (JOURNAL)
Journal identifiersISSN: 2227-9067 • E-ISSN: 2227-9067
PublisherMultidisciplinary Digital Publishing Institute (PUBLISHER • CH)
DOI10.3390/children2030342
PMID27417368
OpenAlexW1607915624
LanguageEN
References cited4

The Undiagnosed Diseases Program (UDP) was started in 2008 with the goals of making diagnoses and facilitating related translational research. The individuals and families seen by the UDP are often unique and medically complex. Approximately 40% of UDP cases are pediatric. The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS) was designed to create a collaborative workspace for researchers, clinicians and families. We describe our progress in developing the system to date, focusing on design rationale, challenges and issues that are likely to be common in the development of similar systems in the future

Disease · Medical diagnosis · Medical education · Pathology · Process management · Program Design Language · Research program · Software engineering · Translational research · Workspace · Autism Spectrum Disorder Research · Biomedical Text Mining and Ontologies · Computer Science · Engineering · Genomics and Rare Diseases · Medicine

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