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：Laurence Ducharme-Crevier (1)
Jennifer Beck (2)
Sandrine Essouri (1) (3)
Philippe Jouvet (1)
Guillaume Emeriaud (1)

1. Pediatric Intensive Care Unit ; CHU Sainte-Justine ; University of Montreal ; 3175 Chemin de la c么te Sainte-Catherine ; Montreal ; QC ; H3T 1C5 ; Canada
2. Keenan Research Centre for Biomedical Science and Li Ka Shing Knowledge Institute of St. Michael鈥檚 Hospital ; Toronto ; Ontario ; Canada
3. Pediatric Intensive Care Unit ; CHU Kremlin Bic锚tre ; Universit茅 Paris Sud ; Le Kremlin Bic锚tre ; France

刊名：Critical Care

出版年：2015

作者：Louise Rose (1) (2) (3) (4) (5)
Marcus J Schultz (6)
Chris R Cardwell (7)
Philippe Jouvet (8)
Danny F McAuley (9)
Bronagh Blackwood (10)

1. Department of Critical Care Medicine ; Sunnybrook Health Sciences Centre ; 2075 Bayview Ave ; Toronto ; ON ; M4N 3M5 ; Canada
2. Lawrence S. Bloomberg Faculty of Nursing ; University of Toronto ; 155 College St ; Toronto ; Ontario ; M5T IP8 ; Canada
3. Provincial Centre of Weaning Excellence ; Toronto East General Hospital ; Toronto ; Canada
4. Li Ka Shing Institute ; St Michael鈥檚 Hospital ; 30 Bond St ; Toronto ; ON ; M5B 1W8 ; Canada
5. West Park Healthcare Centre ; University of Toronto ; 155 College St ; Toronto ; Ontario ; M5T IP8 ; Canada
6. Laboratory of Experimental Intensive Care and Anesthesiology ; Academic Medical Center ; University of Amsterdam ; Meibergdreef 9 ; 1105 AZ ; Amsterdam ; Netherlands
7. Centre for Public Health ; Queen鈥檚 University Belfast ; University Rd ; Belfast ; BT7 1NN ; UK
8. Department of Pediatrics ; Sainte-Justine Hospital ; University of Montreal ; 3175 Chemin de la C么te-Sainte-Catherine ; Montreal ; QC ; H3T 1C5 ; Canada
9. Regional Intensive Care Unit ; Royal Victoria Hospital ; Centre for Infection and Immunity ; Queen鈥檚 University of Belfast ; University Rd ; Belfast ; BT7 1NN ; UK
10. Centre for Infection and Immunity ; School of Medicine ; Dentistry & Biomedical Sciences ; Queen鈥檚 University Belfast ; University Rd ; Belfast ; BT7 1NN ; UK

刊名：Critical Care

出版年：2015