Detalhe da pesquisa
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.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38441167
2.
Delivery of a national prenatal exome sequencing service in England: a mixed methods study exploring healthcare professionals' views and experiences.
Front Genet;
15: 1401705, 2024.
Artigo
em Inglês
| MEDLINE
| ID: mdl-38903755
3.
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.
Artigo
em Inglês
| MEDLINE
| ID: mdl-37996938
4.
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.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35443702
5.
Development of models of care coordination for rare conditions: a qualitative study.
Orphanet J Rare Dis;
17(1): 49, 2022 02 14.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35164822
6.
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.
Artigo
em Inglês
| MEDLINE
| ID: mdl-35935673
7.
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.
Artigo
em Inglês
| MEDLINE
| ID: mdl-33568181
8.
Consensus clinical management guidelines for Alström syndrome.
Orphanet J Rare Dis;
15(1): 253, 2020 09 21.
Artigo
em Inglês
| MEDLINE
| ID: mdl-32958032