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Children 2015, 2(3), 342-357; doi:10.3390/children2030342

The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families

1
Undiagnosed Diseases Program, National Institutes of Health, Bethesda, MD 20892, USA
2
National Institute of Dental and Craniofacial Research, Bethesda, MD 20892, USA
3
National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892, USA
These authors contributed equally to this work.
*
Author to whom correspondence should be addressed.
Academic Editor: Johannes N. van den Anker
Received: 15 April 2015 / Revised: 11 July 2015 / Accepted: 14 July 2015 / Published: 31 July 2015
(This article belongs to the Special Issue Development of Medicines for Paediatric and Rare Diseases)
View Full-Text   |   Download PDF [1262 KB, uploaded 31 July 2015]   |  

Abstract

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. View Full-Text
Keywords: informatics; UDPICS; Undiagnosed Diseases Program; Undiagnosed Diseases Network; rare disease; collaboration software informatics; UDPICS; Undiagnosed Diseases Program; Undiagnosed Diseases Network; rare disease; collaboration software
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (CC BY 4.0).

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MDPI and ACS Style

Guzman, J.; Lee, E.; Draper, D.; Valivullah, Z.; Yu, G.; Sincan, M.; Gahl, W.A.; Adams, D.R. The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families. Children 2015, 2, 342-357.

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