Karin J. Naarding
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View article: The Dutch Dystrophinopathy Database: A National Registry with Standardized Patient and Clinician Reported Real-World Data
The Dutch Dystrophinopathy Database: A National Registry with Standardized Patient and Clinician Reported Real-World Data Open
Background: Duchenne and Becker muscular dystrophy lack curative treatments. Registers can facilitate therapy development, serving as a platform to study epidemiology, assess clinical trial feasibility, identify eligible candidates, collec…
View article: 269th ENMC international workshop: 10 years of clinical trials in Duchenne muscular dystrophy – What have we learned? 9–11 December 2022, Hoofddorp, The Netherlands
269th ENMC international workshop: 10 years of clinical trials in Duchenne muscular dystrophy – What have we learned? 9–11 December 2022, Hoofddorp, The Netherlands Open
There are multiple avenues for therapeutic development in Duchenne muscular dystrophy (DMD), which are highlighted in the first section of this report for the "10 years of Clinical trials in DMD - What have we learned?" workshop. This repo…
View article: The Black Box of Technological Outcome Measures: An Example in Duchenne Muscular Dystrophy
The Black Box of Technological Outcome Measures: An Example in Duchenne Muscular Dystrophy Open
Background: Outcome measures for non-ambulant Duchenne muscular dystrophy (DMD) patients are limited, with only the Performance of the Upper Limb (PUL) approved as endpoint for clinical trials. Objective: We assessed four outcome measures …
View article: Association of Elbow Flexor MRI Fat Fraction With Loss of Hand-to-Mouth Movement in Patients With Duchenne Muscular Dystrophy
Association of Elbow Flexor MRI Fat Fraction With Loss of Hand-to-Mouth Movement in Patients With Duchenne Muscular Dystrophy Open
This study provides Class II evidence that qMRI FF of elbow flexor muscles in patients with DMD predicts loss of hand-to-mouth movement independently of age.
View article: Muscle architecture is associated with muscle fat replacement in <scp>Duchenne</scp> and <scp>Becker</scp> muscular dystrophies
Muscle architecture is associated with muscle fat replacement in <span>Duchenne</span> and <span>Becker</span> muscular dystrophies Open
Introduction/Aims Duchenne and Becker muscular dystrophies (DMD and BMD, respectively) are characterized by fat replacement of different skeletal muscles in a specific temporal order. Given the structural role of dystrophin in skeletal mus…
View article: Preserved thenar muscles in non‐ambulant Duchenne muscular dystrophy patients
Preserved thenar muscles in non‐ambulant Duchenne muscular dystrophy patients Open
Background Clinical trials in Duchenne muscular dystrophy (DMD) focus primarily on ambulant patients. Results cannot be extrapolated to later disease stages due to a decline in targeted muscle tissue. In non‐ambulant DMD patients, hand fun…
View article: Decision-Making And Selection Bias in Four Observational Studies on Duchenne and Becker Muscular Dystrophy
Decision-Making And Selection Bias in Four Observational Studies on Duchenne and Becker Muscular Dystrophy Open
Background: Natural history data are essential for trial design in Duchenne (DMD) and Becker muscular dystrophy (BMD), but recruitment for observational studies can be challenging. Objective: We reviewed reasons why patients or caregivers …
View article: T<sub>2</sub> relaxation‐time mapping in healthy and diseased skeletal muscle using extended phase graph algorithms
T<sub>2</sub> relaxation‐time mapping in healthy and diseased skeletal muscle using extended phase graph algorithms Open
Purpose Multi‐echo spin‐echo (MSE) transverse relaxometry mapping using multi‐component models is used to study disease activity in neuromuscular disease by assessing the T 2 of the myocytic component (T 2water ). Current extended phase gr…
View article: MRI vastus lateralis fat fraction predicts loss of ambulation in Duchenne muscular dystrophy
MRI vastus lateralis fat fraction predicts loss of ambulation in Duchenne muscular dystrophy Open
The hazard ratio of 1.15 corresponds to a 4.11-fold increase of the instantaneous risk of LoA in patients with a 10% higher VL FF at any age. Although results should be confirmed in a larger cohort with prospective determination of the cli…
View article: Stimulation challenge test after STN DBS improves satisfaction in Parkinson's disease patients
Stimulation challenge test after STN DBS improves satisfaction in Parkinson's disease patients Open
SCT improves patients' satisfaction and is recommended especially in case of suboptimal subjective valuations. This information should be considered in clinical practice and in the context of clinical trials.