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

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 P...

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Detalles Bibliográficos
Autores principales: Guzman, Jessica, Lee, Elizabeth, Draper, David, Valivullah, Zaheer, Yu, Guoyun, Sincan, Murat, Gahl, William A., Adams, David R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2015
Materias:
Concept Paper
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4928766/
https://www.ncbi.nlm.nih.gov/pubmed/27417368
http://dx.doi.org/10.3390/children2030342
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author Guzman, Jessica
Lee, Elizabeth
Draper, David
Valivullah, Zaheer
Yu, Guoyun
Sincan, Murat
Gahl, William A.
Adams, David R.
author_facet Guzman, Jessica
Lee, Elizabeth
Draper, David
Valivullah, Zaheer
Yu, Guoyun
Sincan, Murat
Gahl, William A.
Adams, David R.
author_sort Guzman, Jessica
collection PubMed
description 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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spelling pubmed-49287662016-07-12 The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families Guzman, Jessica Lee, Elizabeth Draper, David Valivullah, Zaheer Yu, Guoyun Sincan, Murat Gahl, William A. Adams, David R. Children (Basel) Concept Paper 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. MDPI 2015-07-31 /pmc/articles/PMC4928766/ /pubmed/27417368 http://dx.doi.org/10.3390/children2030342 Text en © 2015 by the authors; licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Concept Paper
Guzman, Jessica
Lee, Elizabeth
Draper, David
Valivullah, Zaheer
Yu, Guoyun
Sincan, Murat
Gahl, William A.
Adams, David R.
The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families
title The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families
title_full The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families
title_fullStr The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families
title_full_unstemmed The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families
title_short The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program’s Experience Developing Custom Software to Support Research for Complex-Disease Families
title_sort undiagnosed diseases program integrated collaboration system (udpics): one program’s experience developing custom software to support research for complex-disease families
topic Concept Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4928766/
https://www.ncbi.nlm.nih.gov/pubmed/27417368
http://dx.doi.org/10.3390/children2030342
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