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Who should measure quality of life, the doctor or the patient?

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Quality of Life in Sarcopenia and Frailty

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Disease‐specific measure of quality of life for myasthenia gravis

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A systematic review of quality of life in adults with muscle disease

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Sildenafil does not improve cardiomyopathy in D uchenne/ B ecker muscular dystrophy

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A phase 3 randomized study evaluating sialic acid extended-release for GNE myopathy

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Development and validation of the Myasthenia Gravis Impairment Index

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Outcome reliability in non‐Ambulatory Boys/Men with duchenne muscular dystrophy

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Measuring quality of life impairment in skeletal muscle channelopathies

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Mexiletine in Myotonic Dystrophy Type 1

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Patient‐identified disease burden in facioscapulohumeral muscular dystrophy

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Medida da função motora: versão da escala para o português e estudo de confiabilidade

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Role of disease severity, illness perceptions, and mood on quality of life in muscle disease

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Chronic pain has a strong impact on quality of life in facioscapulohumeral muscular dystrophy

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Relationship Between Clinical Outcome Measures and Parent Proxy Reports of Health-Related Quality of Life in Ambulatory Children With Duchenne Muscular Dystrophy

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Correlates of a Single-Item Quality-of-Life Measure in People Aging with Disabilities

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Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments

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History of outcome measures for myasthenia gravis

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Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases

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Thymectomy for non-thymomatous myasthenia gravis

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Aceneuramic Acid Extended Release Administration Maintains Upper Limb Muscle Strength in a 48-week Study of Subjects with GNE Myopathy: Results from a Phase 2, Randomized, Controlled Study

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A Movement Monitor Based on Magneto-Inertial Sensors for Non-Ambulant Patients with Duchenne Muscular Dystrophy: A Pilot Study in Controlled Environment

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Significant impact of behavioral and cognitive impairment on quality of life in patients with myotonic dystrophy type 1

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Interventions for preventing and treating cardiac complications in Duchenne and Becker muscular dystrophy and X-linked dilated cardiomyopathy

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A multicentre postal survey investigating the contribution of illness perceptions, coping and optimism to quality of life and mood in adults with muscle disease

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Report of the second Outcome Measures in Myotonic Dystrophy type 1 (OMMYD-2) international workshop San Sebastian, Spain, October 16, 2013

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Patient-reported Outcomes and Adult Patients’ Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group

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MRI change metrics of facioscapulohumeral muscular dystrophy: Stir and T1

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Oral Motor Movements and Swallowing in Patients with Myotonic Dystrophy Type 1

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The validity of the International Physical Activity Questionnaire (IPAQ) for adults with progressive muscle diseases

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Periodic Salbutamol in Facioscapulohumeral Muscular Dystrophy: A Randomized Controlled Trial

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Disease burden of myotonic dystrophy type 1

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Self-Perception of Quality of Life by Adolescents with Neuromuscular Diseases

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Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry

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Efficacy and safety of mexiletine in non-dystrophic myotonias: A randomised, double-blind, placebo-controlled, cross-over study

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Quality of life in patients with myotonic dystrophy type 2

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Issues in Aging With Cerebral Palsy

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Clinical, biochemical, and pathological characteristics of clevudine-associated myopathy

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Quality of life in long term ventilated adult patients with Duchenne muscular dystrophy

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Long-Term Safety and Usefulness of Mexiletine in a Large Cohort of Patients Affected by Non-dystrophic Myotonias

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Quality of life in patients with chronic respiratory failure on home mechanical ventilation

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Multidimensional aspects of pain in myotonic dystrophies.

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Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease

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Risdiplam Real World Data – Looking Beyond Motor Neurons and Motor Function Measures

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Shared medical appointments improve QOL in neuromuscular patients

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Self-Perception of Quality of Life by Adolescents with Neuromuscular Diseases

Vuillerot, C., Hodgkinson, I., Bissery, A., Schott-Péthelaz, A.-M., Iwaz, J., Écochard, R., D’Anjou, M.-C., Commare, M.-C., & Berard, C. (2009) · HAL · Cited by 28

Separating emotions from consequences in muscle disease: Comparing beneficial and unhelpful illness schemata to inform intervention development

Graham, C. D., Rose, M. R., Hankins, M., Chalder, T., & Weinman, J. (2013) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2012.09.012 · Cited by 27

Validation of the ICF core set for neuromuscular diseases.

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Disability, Doctors and Sexuality: Do Healthcare Providers Influence the Sexual Wellbeing of People Living with a Neuromuscular Disorder?

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Validation of the individualised neuromuscular quality of life for the USA with comparison of the impact of muscle disease on those living in USA versus UK

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Five-year study of quality of life in myotonic dystrophy

Perić, S., Vujnić, M., Dobricic, V., Marjanović, A., Basta, I. Z., Novaković, I. V., Lavrnić, D., & Rakočević-Stojanović, V. (2015) · Acta Neurologica Scandinavica · doi:10.1111/ane.12549 · Cited by 26

213th ENMC International Workshop: Outcome measures and clinical trial readiness in idiopathic inflammatory myopathies, Heemskerk, The Netherlands, 18–20 September 2015

Benvéniste, O., Rider, L. G., Aggarwal, R., Allenbach, Y., Benvéniste, O., Bleecker, J. D., de Groot, I., Devilliers, H., Hilton‐Jones, D., Hogrel, J., et al. (2016) · Neuromuscular Disorders · doi:10.1016/j.nmd.2016.05.014 · Cited by 25

Phase II/III Study of Aceneuramic Acid Administration for GNE Myopathy in Japan

Suzuki, N., Mori‐Yoshimura, M., Katsuno, M., Takahashi, M. P., Yamashita, S., Oya, Y., Hashizume, A., Yamada, S., Nakamori, M., Izumi, R., et al. (2023) · Journal of Neuromuscular Diseases · doi:10.3233/jnd-230029 · Cited by 25

Quality of life in adult patients with limb–girdle muscular dystrophies

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Central Nervous System Involvement as Outcome Measure for Clinical Trials Efficacy in Myotonic Dystrophy Type 1

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The quality of life in genetic neuromuscular disease questionnaire: Rasch validation of the French version

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Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers—A Prospective, Cross-Sectional, Multi-Center Analysis

Wohnrade, C., Velling, A.-K., Mix, L., Wurster, C. D., Cordts, I., Stolte, B., Zeller, D., Uzelac, Ž., Platen, S., Hagenacker, T., et al. (2023) · Brain Sciences · doi:10.3390/brainsci13010110 · Cited by 27

Prospective measurement of quality of life in myotonic dystrophy type 1

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The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

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The individualized neuromuscular quality of life questionnaire: Cultural translation and psychometric validation for the Dutch population

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Exploring quality of life in people with slowly-progressive neuromuscular disease

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Myotonic dystrophy patient preferences in patient‐reported outcome measures

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Mutation spectrum and health status in skeletal muscle channelopathies in Japan

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A New Self-Report Quality of Life Questionnaire for Children With Neuromuscular Disorders

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MG-QoL-15 scores in treated myasthenia gravis: Experience from a university hospital in India

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Review of patient‐reported outcome measures for use in myotonic dystrophy type 1 patients

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Development and preliminary evidence of the psychometric properties of the GNE myopathy functional activity scale

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The factor structure of the SF‐36 in adults with progressive neuromuscular disorders

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A randomised controlled trial of acceptance and commitment therapy for improving quality of life in people with muscle diseases.

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The health-related quality of life, mental health and mental illnesses of patients with inclusion body myositis (IBM): results of a mixed methods systematic review

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A new family with transportinopathy: increased clinical heterogeneity

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The Spinal Muscular Atrophy Health Index: Italian validation of a disease-specific outcome measure

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Quality of Life and Autonomy in Emerging Adults with Early‐Onset Neuromuscular Disorders

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Towards clinical outcome measures in myotonic dystrophy type 2: a systematic review

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Effects of shared medical appointments on quality of life and cost-effectiveness for patients with a chronic neuromuscular disease. Study protocol of a randomized controlled trial

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New Clinical End Points in Rehabilitation Medicine: Tools for Measuring Quality of Life

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Muscle fat replacement and contractility in patients with skeletal muscle sodium channel disorders

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The role of rehabilitation in the management of late-onset Pompe disease: a narrative review of the level of evidence.

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Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases

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Validation of the Individualized Neuromuscular Quality of Life Questionnaire in Korean Patients With Genetic Neuromuscular Diseases

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Validation of the individualised neuromuscular quality of life for the USA with comparison of the impact of muscle disease on those living in USA versus UK

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the impact of muscle disease on those living in

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