The undiagnosed diseases program integrated collaboration system (Udpics): One program’s experience developing custom software to support research for complex-disease families

Jessica Guzman; Elizabeth Lee; David Draper; Zaheer Valivullah; Guoyun Yu; Murat Sincan; William A. Gahl; David R. Adams

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

Jessica Guzman, Elizabeth Lee, David Draper, Zaheer Valivullah, Guoyun Yu, Murat Sincan, William A. Gahl, David R. Adams

Research output: Contribution to journal › Article › peer-review

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.

Original language	English (US)
Pages (from-to)	342-357
Number of pages	16
Journal	Children
Volume	2
Issue number	3
DOIs	https://doi.org/10.3390/children2030342
State	Published - Sep 2015
Externally published	Yes

Keywords

Collaboration software
Informatics
Rare disease
UDPICS
Undiagnosed Diseases Network
Undiagnosed Diseases Program

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health

Access to Document

10.3390/children2030342

Cite this

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title = "The undiagnosed diseases program integrated collaboration system (Udpics): One program{\textquoteright}s experience developing custom software to support research for complex-disease families",

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.",

keywords = "Collaboration software, Informatics, Rare disease, UDPICS, Undiagnosed Diseases Network, Undiagnosed Diseases Program",

author = "Jessica Guzman and Elizabeth Lee and David Draper and Zaheer Valivullah and Guoyun Yu and Murat Sincan and Gahl, {William A.} and Adams, {David R.}",

note = "Publisher Copyright: {\textcopyright} 2015 by the authors; licensee MDPI, Basel, Switzerland.",

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language = "English (US)",

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AU - Guzman, Jessica

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AU - Draper, David

AU - Valivullah, Zaheer

AU - Yu, Guoyun

AU - Sincan, Murat

AU - Gahl, William A.

AU - Adams, David R.

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AB - 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.

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KW - Informatics

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KW - UDPICS

KW - Undiagnosed Diseases Network

KW - Undiagnosed Diseases Program

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The undiagnosed diseases program integrated collaboration system (Udpics): One program’s experience developing custom software to support research for complex-disease families

Abstract

Keywords

ASJC Scopus subject areas

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