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1.
'Something that helped the whole picture': Experiences of parents offered rapid prenatal exome sequencing in routine clinical care in the English National Health Service.
Prenat Diagn
; 44(4): 465-479, 2024 Apr.
Artículo
Inglés
| MEDLINE | ID: mdl-38441167
2.
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.
Orphanet J Rare Dis
; 18(1): 364, 2023 Nov 23.
Artículo
Inglés
| MEDLINE | ID: mdl-37996938
3.
Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.
Orphanet J Rare Dis
; 17(1): 171, 2022 04 20.
Artículo
Inglés
| MEDLINE | ID: mdl-35443702
4.
Development of models of care coordination for rare conditions: a qualitative study.
Orphanet J Rare Dis
; 17(1): 49, 2022 02 14.
Artículo
Inglés
| MEDLINE | ID: mdl-35164822
5.
Optimising Exome Prenatal Sequencing Services (EXPRESS): a study protocol to evaluate rapid prenatal exome sequencing in the NHS Genomic Medicine Service.
NIHR Open Res
; 2: 10, 2022.
Artículo
Inglés
| MEDLINE | ID: mdl-35935673
6.
How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study.
Orphanet J Rare Dis
; 16(1): 76, 2021 02 10.
Artículo
Inglés
| MEDLINE | ID: mdl-33568181
7.
Consensus clinical management guidelines for Alström syndrome.
Orphanet J Rare Dis
; 15(1): 253, 2020 09 21.
Artículo
Inglés
| MEDLINE | ID: mdl-32958032
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