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

关键词：Patient ; centered outcomes research ; Patient ; centered care ; Outcomes research ; Outcome measures ; Metabolism ; Inborn errors ; Assessment ; Patient outcomes ; Rare diseases ; Family ; centered care

刊名：BMC Pediatrics

出版年：2015

作者：Ana?s Lacasse (1) (2)
Evelyne Rey (2) (3) (4)
Ema Ferreira (1) (5)
Caroline Morin (5)
Anick Bérard (1) (2)

刊名：BMC Pregnancy and Childbirth

出版年：2009