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5. Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease
作者:Sara D Khangura (1)
Maria D Karaceper (1)
Yannis Trakadis (2)
John J Mitchell (2)
Pranesh Chakraborty (1) (3)
Kylie Tingley (1)
Doug Coyle (1)
Scott D Grosse (4)
Jonathan B Kronick (5) (6)
Anne-Marie Laberge (7)
Julian Little (1)
Chitra Prasad (8)
Lindsey Sikora (1)
Komudi Siriwardena (6)
Rebecca Sparkes (9)
Kathy N Speechley (8)
Sylvia Stockler (10)
Brenda J Wilson (1)
Kumanan Wilson (11)
Reem Zayed (1)
Beth K Potter (1)
on behalf of the Canadian Inherited Metabolic Diseases Research Network (CIMDRN)

1. University of Ottawa
; 451 Smyth Road ; Ottawa ; ON ; Canada
2. Montreal Children鈥檚 Hospital
; McGill University Health Centre ; 2300 Tupper Street ; Montreal ; QC ; Canada
3. Newborn Screening Ontario
; Children鈥檚 Hospital of Eastern Ontario ; 415 Smyth Road ; Ottawa ; ON ; Canada
4. National Center on Birth Defects and Developmental Disabilities
; Centers for Disease Control and Prevention ; 1600 Clifton Road ; Atlanta ; GA ; USA
5. University of Toronto
; 27 King鈥檚 College Circle ; Toronto ; ON ; Canada
6. Hospital for Sick Children
; 555 University Avenue ; Toronto ; ON ; Canada
7. Centre Hospitalier Universitaire Sainte-Justine
; 3175 Chemin de la C么te-Sainte-Catherine ; Montreal ; QC ; Canada
8. Western University
; 1151 Richmond Street ; London ; ON ; Canada
9. Alberta Children鈥檚 Hospital
; 2888 Shaganappi Trail NW ; Calgary ; AB ; Canada
10. British Columbia Children鈥檚 Hospital
; 4480 Oak Street ; Vancouver ; BC ; Canada
11. Ottawa Hospital Research Institute
; 725 Parkdale Avenue ; Ottawa ; ON ; Canada
刊名:BMC Pediatrics
出版年:2015
8. Use of State Administrative Data Sources to Study Adolescents and Young Adults with Rare Conditions
作者:J. A. Royer (1)
J. W. Hardin (2)
S. McDermott (2)
L. Ouyang (3)
J. R. Mann (4)
O. D. Ozturk (5)
J. Bolen (3)

1. Division of Research and Statistics
; South Carolina Budget and Control Board ; 1919 Blanding Street ; Columbia ; SC ; 29201 ; USA
2. Department of Epidemiology and Biostatistics
; University of South Carolina Arnold School of Public Health ; 800 Sumter Street ; Columbia ; SC ; 29208 ; USA
3. Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities
; Atlanta ; GA ; USA
4. Department of Family and Preventive Medicine
; University of South Carolina School of Medicine ; 3209 Colonial Drive ; Columbia ; SC ; 29203 ; USA
5. Moore School of Business
; Department of Economics ; University of South Carolina ; Columbia ; SC ; 29208 ; USA
刊名:Journal of General Internal Medicine
出版年:2014
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