Spanish translation and linguistic validation of the North Star Ambulatory Assessment for Duchenne muscular dystrophy functional evaluation

CONCLUSION: Our study has resulted in a convenient and reliable instrument for the quantification of functional abilities in boys with Duchenne muscular dystrophy in Spain. Our innovations in methods and our results could be used as a suggested template for the North Star Ambulatory Assessment linguistic validation in other languages.PMID:33978227 | DOI:10.33588/rn.7210.2020604
Source: Revista de Neurologia - Category: Neurology Authors: Source Type: research

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The DMD Hub, initiated in 2015, is an innovative collaboration between Duchenne UK, leading UK neuromuscular centres of excellence and the National health service (NHS) with the aim of increasing capacity for Duchenne muscular dystrophy (DMD) trials and improving trial readiness. With investment exceeding £2.7million, the DMD Hub has facilitated the sharing of expertise and has successfully developed a network of trial-ready centres in the UK able to take on interventional trials in DMD. The DMD Hub has funded 30 key posts including doctors, nurses, physiotherapists and clinical trial coordinators a t the two centres...
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
Karaduman A Abstract Introduction: The aim of this study was to investigate whether trunk control is associated with the upper limb function of children with Duchenne Muscular Dystrophy (DMD).Methods: The children included in the study were divided into two groups according to the Trunk Control Measurement Scale total scores. Twenty-five children whose trunk control levels were lower than 30.5 points were included in Group 1 while 31 children who had good levels of trunk control between 30.5 and 58 points were included in Group 2. General functional levels, muscular strength, and function of the upper limb were as...
Source: Physiotherapy Theory and Practice - Category: Physiotherapy Authors: Tags: Physiother Theory Pract Source Type: research
Authors: Angelini C, Marozzo R, Pegoraro V Abstract Becker muscular dystrophy (BMD) has onset usually in childhood, frequently by 11 years. BMD can present in several ways such as waddling gait, exercise related cramps with or without myoglobinuria. Rarely cardiomyopathy might be the presenting feature. The evolution is variable. BMD is caused by dystrophin deficiency due to inframe deletions, mutations or duplications in dystrophin gene (Xp21.2) We review here the evolution and current therapy presenting a personal series of cases followed for over two decades, with multifactorial treatment regimen. Early treatmen...
Source: Acta Myologica - Category: Neurology Tags: Acta Myol Source Type: research
This study was planned to demonstrate the reliability and validity of trunk control measurement scale (TCMS) in DMD. Twenty boys with DMD were included in the study. Two physiotherapists evaluated all boys with TCMS for inter-rater reliability. TCMS was applied with two weeks interval by the same physiotherapist to examine inter-rater reliability.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
Slowing in the maximum relaxation rate (MRR) is a reliable index of respiratory muscle fatigue and it is related to weakness. The aim of our study was to assess MRR in Duchenne muscular dystrophy (DMD) and compare to matched-paired healthy subjects. MRR, through non-invasive sniff nasal inspiratory pressure (SNIP), was calculated as the first derivative of pressure with respect to time, normalized by the pressure peak of the same test and expressed as percentage pressure fall per 10ms. We evaluated 15 DMD patients and compared to 15 healthy subjects paired by gender and age (14.7 ± 5.4 years). DMD patients exhibited...
Source: European Respiratory Journal - Category: Respiratory Medicine Authors: Tags: Physiotherapists Source Type: research
The Jain clinical outcome study (COS) is an international study of 203 adults with dysferlinopathy in 8 countries. Patients undergo six visits over three years, during which physiotherapy and medical assessments as well as muscle MRI were performed. Our aim is to analyse baseline muscle pathology by MRI in a large cohort of dysferlinopathy patients and to examine the relationship between baseline muscle MRI findings and the results of longitudinal functional outcome measures over one year. We aim to identify which muscles may predict a rapid decline over one year.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
Performing daily activities independently is becoming more difficult over time for patients with neuromuscular disorders, due to progressive muscle weakness. Seated in a wheelchair, it is important to be able to move the upper body. This is not limited by upper extremity and hand movement, but the trunk and head play also an important role in movement and stabilization. Arm supportive devices are being developed, but the development of and integration with dynamic trunk and head supportive devices is lacking.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
This study aimed to describe and compare the performance of men with Duchenne muscular dystrophy and age-matched controls (participants aged from 11 to 29 years and volunteers with Duchenne muscular dystrophy were classified as Vignos 1 to 8).
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
In performing daily activities from a seated position, besides the upper extremities, the trunk plays a crucial role. For patients with Duchenne muscular dystrophy (DMD) it becomes more difficult over time to perform such activities independently due to muscle weakness. The aim of this study was to gain insight in trunk movement and back muscle activity in patients with DMD in different disease stages, when performing seated daily activities. This knowledge will be used for the development of a dynamic trunk supportive device for these patients.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
To assess the effect of elastic bandage by Therapy Taping Method on motor functions in children with Duchenne muscular dystrophy (DMD). Five children, divided in two groups (walked and no-walked) with confirmed clinical diagnosis of DMD that visited the physiotherapy clinic at UniMetrocamp/Wyden were selected. Their degree of motor function was assessed by Motor Function Measure (MFM). After that, they performed physical therapy for two months and were reassessed according to the mentioned scale.
Source: Neuromuscular Disorders - Category: Neurology Authors: Source Type: research
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