Predicting Loss of Ambulation in Limb Girdle Muscular Dystrophy R9
ABSTRACT Background Limb girdle muscular dystrophy type R9 (LGMDR9) results from biallelic variants in FKRP. There is limited data to predict loss of ambulation (LOA) among those with LGMDR9. Methods Participants in an ongoing dystroglycanopathy natural history study (NCT00313677) with FKRP variants who had achieved ambulation and were more than 3 ...
Chandra L. Miller +6 more
wiley +1 more source
Public Involvement in Cancer Research: Collaborative Evaluation Using Photovoice.
Teodorowski P +6 more
europepmc +1 more source
Applying an Ethical Lens to the Treatment of People With Multiple Sclerosis
ABSTRACT The practice of neurology requires an understanding of clinical ethics for decision‐making. In multiple sclerosis (MS) care, there are a wide range of ethical considerations that may arise. These involve shared decision‐making around selection of a disease‐modifying therapy (DMT), risks and benefits of well‐studied medications in comparison to
Methma Udawatta, Farrah J. Mateen
wiley +1 more source
Incorporation of Patient and Public Involvement in Statistical Methodology Research: Summary of Workshop Proceedings. [PDF]
Smith A +17 more
europepmc +1 more source
ABSTRACT Objective To investigate the value of constructing models based on habitat radiomics and pathomics for predicting the risk of progression in high‐grade gliomas. Methods This study conducted a retrospective analysis of preoperative magnetic resonance (MR) images and pathological sections from 72 patients diagnosed with high‐grade gliomas (52 ...
Yuchen Zhu +14 more
wiley +1 more source
A practical step-by-step approach for patient and public involvement in eHealth intervention research: Lessons learned from three case projects. [PDF]
van Vliet MHM +6 more
europepmc +1 more source
ABSTRACT Objective Glioma recurrence severely impacts patient prognosis, with current treatments showing limited efficacy. Traditional methods struggle to analyze recurrence mechanisms due to challenges in assessing tumor heterogeneity, spatial dynamics, and gene networks.
Lei Qiu +10 more
wiley +1 more source
A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research. [PDF]
Piercy J, Hamilton C.
europepmc +1 more source
ABSTRACT Background SOX1 antibody‐positive paraneoplastic neurological syndromes (PNS) exhibit significant population‐specific clinical heterogeneity. While Western cohorts predominantly manifest Lambert‐Eaton myasthenic syndrome (65%–80%), comprehensive clinical characterization and treatment response data in Asian populations remain critically ...
Jin‐Long Ye +11 more
wiley +1 more source
Patient and public involvement in developing and validating an instrument for assessing the scaling potential of innovations in health and social services: A consensus study. [PDF]
de Carvalho Corôa R +11 more
europepmc +1 more source

