Detalhe da pesquisa
1.
Health services use by children identified as heterozygous hemoglobinopathy mutation carriers via newborn screening.
BMC Pediatr
; 21(1): 296, 2021 07 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-34210267
2.
Health Care for Mitochondrial Disorders in Canada: A Survey of Physicians.
Can J Neurol Sci
; 46(6): 717-726, 2019 11.
Artigo
em Inglês
| MEDLINE | ID: mdl-31387656
3.
Translating rare-disease therapies into improved care for patients and families: what are the right outcomes, designs, and engagement approaches in health-systems research?
Genet Med
; 18(2): 117-23, 2016 Feb.
Artigo
em Inglês
| MEDLINE | ID: mdl-25856667
4.
Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups.
J Inherit Metab Dis
; 39(1): 139-47, 2016 Jan.
Artigo
em Inglês
| MEDLINE | ID: mdl-26209272
5.
Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.
BMC Pediatr
; 15: 7, 2015 Feb 13.
Artigo
em Inglês
| MEDLINE | ID: mdl-25886474
6.
Health services use among children diagnosed with medium-chain acyl-CoA dehydrogenase deficiency through newborn screening: a cohort study in Ontario, Canada.
Orphanet J Rare Dis
; 14(1): 70, 2019 03 22.
Artigo
em Inglês
| MEDLINE | ID: mdl-30902101
7.
Experiences of caregivers of children with inherited metabolic diseases: a qualitative study.
Orphanet J Rare Dis
; 11(1): 168, 2016 12 07.
Artigo
em Inglês
| MEDLINE | ID: mdl-27927250