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...

Full description

Saved in:
Bibliographic Details
Main Authors: Jessica Guzman (Author), Elizabeth Lee (Author), David Draper (Author), Zaheer Valivullah (Author), Guoyun Yu (Author), Murat Sincan (Author), William A. Gahl (Author), David R. Adams (Author)
Format: Book
Published: MDPI AG, 2015-07-01T00:00:00Z.
Subjects:
Online Access:Connect to this object online.
Tags: Add Tag
No Tags, Be the first to tag this record!

MARC

LEADER 00000 am a22000003u 4500
001 doaj_a87dadb3a1db42a89590fba3ab7a62c3
042 |a dc 
100 1 0 |a Jessica Guzman  |e author 
700 1 0 |a Elizabeth Lee  |e author 
700 1 0 |a David Draper  |e author 
700 1 0 |a Zaheer Valivullah  |e author 
700 1 0 |a Guoyun Yu  |e author 
700 1 0 |a Murat Sincan  |e author 
700 1 0 |a William A. Gahl  |e author 
700 1 0 |a David R. Adams  |e author 
245 0 0 |a The Undiagnosed Diseases Program Integrated Collaboration System (UDPICS): One Program's Experience Developing Custom Software to Support Research for Complex-Disease Families 
260 |b MDPI AG,   |c 2015-07-01T00:00:00Z. 
500 |a 2227-9067 
500 |a 10.3390/children2030342 
520 |a 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. 
546 |a EN 
690 |a informatics 
690 |a UDPICS 
690 |a Undiagnosed Diseases Program 
690 |a Undiagnosed Diseases Network 
690 |a rare disease 
690 |a collaboration software 
690 |a Pediatrics 
690 |a RJ1-570 
655 7 |a article  |2 local 
786 0 |n Children, Vol 2, Iss 3, Pp 342-357 (2015) 
787 0 |n http://www.mdpi.com/2227-9067/2/3/342 
787 0 |n https://doaj.org/toc/2227-9067 
856 4 1 |u https://doaj.org/article/a87dadb3a1db42a89590fba3ab7a62c3  |z Connect to this object online.