Nicoline Voet
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View article: Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study
Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study Open
Background Persons living with a rare disease (PLWRD) often encounter burdensome and stressful events that may severely affect their psychosocial vulnerability. There is an urgent need for psychosocial support in PLWRD. We aimed to reach c…
View article: Should we be careful with exercise in post-exertional malaise after long COVID?
Should we be careful with exercise in post-exertional malaise after long COVID? Open
Contains fulltext : 317492.pdf (Publisher’s version ) (Open Access)
View article: Experiences of living with GSD5 (McArdle) disease: challenges and strategies. A qualitative study in the Netherlands
Experiences of living with GSD5 (McArdle) disease: challenges and strategies. A qualitative study in the Netherlands Open
Glycogen Storage Disease type 5 (GSD5 or McArdle disease) is caused by deficient glycogen phosphorylase enzyme activity in skeletal muscles. Individuals with GSD5 experience symptoms like muscle pain, fatigue, and tachycardia during exerti…
View article: A 5‐year natural history cohort of patients with facioscapulohumeral muscular dystrophy determining disease progression and feasibility of clinical outcome assessments for clinical trials
A 5‐year natural history cohort of patients with facioscapulohumeral muscular dystrophy determining disease progression and feasibility of clinical outcome assessments for clinical trials Open
Introduction/Aims The number of clinical trials in facioscapulohumeral muscular dystrophy (FSHD) is expected to increase in the near future. There is a need for clinical outcome assessments (COAs) that can capture disease progression over …
View article: Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary
Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary Open
Background: Interstitial lung diseases (ILD) are a heterogenous group of diseases that involve inflammation and/or fibrosis of the lung parenchyma. ILD can exert significant stress on a person’s extrapulmonary systems, eroding organ and ph…
View article: Therapy effect on hand function after home use of a wearable assistive soft-robotic glove supporting grip strength
Therapy effect on hand function after home use of a wearable assistive soft-robotic glove supporting grip strength Open
Background Soft-robotic gloves with an assist-as-needed control have the ability to assist daily activities where needed, while stimulating active and highly functional movements within the user’s possibilities. Employment of hand activiti…
View article: Patient-Reported Outcome Measures in Neuromuscular Diseases: A Scoping Review
Patient-Reported Outcome Measures in Neuromuscular Diseases: A Scoping Review Open
Patient-reported outcome measures (PROMs) are valuable in comprehensively understanding patients’ health experiences and informing healthcare decisions in research and clinical care without clinicians’ input. Until now, no central resource…
View article: Respiratory features of centronuclear myopathy in the Netherlands
Respiratory features of centronuclear myopathy in the Netherlands Open
Centronuclear myopathy (CNM) is a heterogeneous group of muscle disorders primarily characterized by muscle weakness and variable degrees of respiratory dysfunction caused by mutations in MTM1, DNM2, RYR1, TTN and BIN1. X-linked myotubular…
View article: Smartphone and Wearable Sensors for the Estimation of Facioscapulohumeral Muscular Dystrophy Disease Severity: Cross-sectional Study
Smartphone and Wearable Sensors for the Estimation of Facioscapulohumeral Muscular Dystrophy Disease Severity: Cross-sectional Study Open
Background Facioscapulohumeral muscular dystrophy (FSHD) is a progressive neuromuscular disease. Its slow and variable progression makes the development of new treatments highly dependent on validated biomarkers that can quantify disease p…
View article: Objective Monitoring of Facioscapulohumeral Dystrophy During Clinical Trials Using a Smartphone App and Wearables: Observational Study
Objective Monitoring of Facioscapulohumeral Dystrophy During Clinical Trials Using a Smartphone App and Wearables: Observational Study Open
Background Facioscapulohumeral dystrophy (FSHD) is a progressive muscle dystrophy disorder leading to significant disability. Currently, FSHD symptom severity is assessed by clinical assessments such as the FSHD clinical score and the Time…
View article: Smartphone and Wearable Sensors for the Estimation of Facioscapulohumeral Muscular Dystrophy Disease Severity: Cross-sectional Study (Preprint)
Smartphone and Wearable Sensors for the Estimation of Facioscapulohumeral Muscular Dystrophy Disease Severity: Cross-sectional Study (Preprint) Open
BACKGROUND Facioscapulohumeral muscular dystrophy (FSHD) is a progressive neuromuscular disease. Its slow and variable progression makes the development of new treatments highly dependent on validated biomarkers that can quantify disease …
View article: Surface Electromyography Thresholds as a Measure for Performance Fatigability During Incremental Cycling in Patients With Neuromuscular Disorders
Surface Electromyography Thresholds as a Measure for Performance Fatigability During Incremental Cycling in Patients With Neuromuscular Disorders Open
In healthy persons, there is an excellent relation between the timing of the (two) surface electromyography (sEMG) thresholds and the (two) ventilatory thresholds during exercise. The primary aim of this study was to determine the relative…
View article: Therapeutic Effect of a Soft Robotic Glove for Activities of Daily Living In People With Impaired Hand Strength: Protocol for a Multicenter Clinical Trial (iHand)
Therapeutic Effect of a Soft Robotic Glove for Activities of Daily Living In People With Impaired Hand Strength: Protocol for a Multicenter Clinical Trial (iHand) Open
Background Decline of hand function, especially reduced hand strength, is a common problem that can be caused by many disorders and results in difficulties performing activities of daily living. A wearable soft robotic glove may be a solut…
View article: Therapeutic Effect of a Soft Robotic Glove for Activities of Daily Living In People With Impaired Hand Strength: Protocol for a Multicenter Clinical Trial (iHand) (Preprint)
Therapeutic Effect of a Soft Robotic Glove for Activities of Daily Living In People With Impaired Hand Strength: Protocol for a Multicenter Clinical Trial (iHand) (Preprint) Open
BACKGROUND Decline of hand function, especially reduced hand strength, is a common problem that can be caused by many disorders and results in difficulties performing activities of daily living. A wearable soft robotic glove may be a solu…
View article: Why People With Parkinson's Disease Experience <scp>Near‐Drowning</scp>—and How to Prevent It
Why People With Parkinson's Disease Experience <span>Near‐Drowning</span>—and How to Prevent It Open
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View article: Dysphagia and Dysarthria in Children with Neuromuscular Diseases, a Prevalence Study
Dysphagia and Dysarthria in Children with Neuromuscular Diseases, a Prevalence Study Open
The overall pooled prevalence of dysphagia and dysarthria was high in the population of pNMD. It can be argued that periodic monitoring of dysphagia and dysarthria and early referral to a speech language therapist should be a necessity fro…
View article: Cognitive behavioural therapy for reducing fatigue in post-polio syndrome and in facioscapulohumeral dystrophy: A comparison
Cognitive behavioural therapy for reducing fatigue in post-polio syndrome and in facioscapulohumeral dystrophy: A comparison Open
Fatigue-related cognitions in severely fatigued patients with post-polio syndrome are not clearly different from that in facioscapulohumeral dystrophy. Thus, the lack of efficacy of cognitive behavioural therapy in post-polio syndrome cann…
View article: Consensus on Exercise Reporting Template (CERT): Modified Delphi Study
Consensus on Exercise Reporting Template (CERT): Modified Delphi Study Open
Background Exercise interventions are often incompletely described in reports of clinical trials, hampering evaluation of results and replication and implementation into practice. Objective The aim of this study was to develop a standardiz…
View article: Aerobic exercise and cognitive behavioral therapy in facioscapulohumeral muscular dystrophy: a model based approach
Aerobic exercise and cognitive behavioral therapy in facioscapulohumeral muscular dystrophy: a model based approach Open
People with facioscapulohumeral muscular dystrophy (FSHD), a muscular dystrophy, often experience severe chronic fatigue. For them, daily life is top sport. One would expect that being active leads to a higher level of fatigue. The opposit…