Detalhe da pesquisa
1.
Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers' perspective: a two-part study.
BMC Neurol
; 21(1): 143, 2021 Mar 31.
Artigo
em Inglês
| MEDLINE | ID: mdl-33789607
2.
Correction to: Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers' perspective: a two-part study.
BMC Neurol
; 21(1): 354, 2021 Sep 13.
Artigo
em Inglês
| MEDLINE | ID: mdl-34517827
3.
Systematic Literature Review of the Natural History of Spinal Muscular Atrophy: Motor Function, Scoliosis, and Contractures.
Neurology
; 101(21): e2103-e2113, 2023 Nov 21.
Artigo
em Inglês
| MEDLINE | ID: mdl-37813581
4.
Reverse Engineering of Digital Measures: Inviting Patients to the Conversation.
Digit Biomark
; 7(1): 28-44, 2023.
Artigo
em Inglês
| MEDLINE | ID: mdl-37206894
5.
Patientenpartizipation in der pädiatrischen Versorgungsforschung am Universitätsklinikum Freiburg: von der Projektbeteiligung zum Patientenbeirat.
Z Evid Fortbild Qual Gesundhwes
; 173: 98-105, 2022 Sep.
Artigo
em Alemão
| MEDLINE | ID: mdl-36038462
6.
Understanding European patient expectations towards current therapeutic development in spinal muscular atrophy.
Neuromuscul Disord
; 31(5): 419-430, 2021 05.
Artigo
em Inglês
| MEDLINE | ID: mdl-33752935
7.
A Patient-Centered Evaluation of Meaningful Change on the 32-Item Motor Function Measure in Spinal Muscular Atrophy Using Qualitative and Quantitative Data.
Front Neurol
; 12: 770423, 2021.
Artigo
em Inglês
| MEDLINE | ID: mdl-35111124
8.
Importance of Patient Involvement in the Value Assessment Process: On the Way Towards Personalised Treatments.
Pharmacoeconomics
; 40(Suppl 1): 7-10, 2022 04.
Artigo
em Inglês
| MEDLINE | ID: mdl-34914034
9.
Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients.
Neuromuscul Disord
; 27(5): 428-438, 2017 May.
Artigo
em Inglês
| MEDLINE | ID: mdl-28237437
10.
The need for evidence-based treatment decisions in spinal muscular atrophy type 0.
Ann Clin Transl Neurol
; 8(10): 2094-2095, 2021 10.
Artigo
em Inglês
| MEDLINE | ID: mdl-34546649
11.
A Decision for Life - Treatment decisions in newly diagnosed families with spinal muscular atrophy (SMA).
Eur J Paediatr Neurol
; 30: 105-107, 2021 Jan.
Artigo
em Inglês
| MEDLINE | ID: mdl-33353801