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Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis

Health expectations : an international journal of public participation in health care and health policy, 2023-08, Vol.26 (4), p.1418-1435

2023

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Survey of service needs to embed genome sequencing for motor neuron disease in neurology in the English National Health Service

Journal of medical genetics, 2024-07, Vol.61 (7), p.661-665

2024

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Supporting people with Motor Neuron Disease (MND) to make decisions about gastrostomy feeding tube placement: a survey of UK healthcare professionals' practice and beliefs

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2024-05, Vol.25 (3-4), p.290-298

2024

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Diagnosis and management of motor neurone disease

BMJ (British Medical Journal), 2008-03, Vol.336 (7645), p.658-662

International edition, 2008

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Development of a novel patient reported outcome measure for health-related quality of life in amyotrophic lateral sclerosis (PROQuALS): study protocol

Health and quality of life outcomes, 2024-08, Vol.22 (1), p.69-8, Article 69

2024

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Enteral feeding in neurological disorders

Practical Neurology, 2016-10, Vol.16 (5), p.352-361

2016

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Analysis of incidence of motor neuron disease in England 1998-2019: use of three linked datasets

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2022-07, Vol.23 (5-6), p.363-371

2022

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Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

Journal of neurology, 2020-03, Vol.267 (3), p.607-615

2020

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Gastrostomy use in motor neurone disease (MND): A review, meta-analysis and survey of current practice

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2013-03, Vol.14 (2), p.96-104

2013

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Cost‐effectiveness of acceptance and commitment therapy for people living with motor neuron disease, and their health‐related quality of life

European journal of neurology, 2024-08, Vol.31 (8), p.e16317-n/a

2024

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Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre

BMJ open, 2019-10, Vol.9 (10), p.e028526-e028526

2019

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Multicentre appraisal of amyotrophic lateral sclerosis biofluid biomarkers shows primacy of blood neurofilament light chain

Brain communications, 2022-01, Vol.4 (1), p.fcac029-fcac029

2022

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Exploring patient and public involvement in motor neuron disease research

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2019-10, Vol.20 (7-8), p.511-520

2019

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Longitudinal multi-modal muscle-based biomarker assessment in motor neuron disease

Journal of neurology, 2020-01, Vol.267 (1), p.244-256

2020

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Impact of the covid-19 pandemic on amyotrophic lateral sclerosis care in the UK

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2023-02, Vol.24 (1-2), p.91-99

2023

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Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

BMJ open, 2019-10, Vol.9 (10), p.e028525

2019

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The natural history of motor neuron disease: Assessing the impact of specialist care

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2013-01, Vol.14 (1), p.13-19

2013

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Concurrence of multiple sclerosis and amyotrophic lateral sclerosis in patients with hexanucleotide repeat expansions of C9ORF72

Journal of neurology, neurosurgery and psychiatry, 2013-01, Vol.84 (1), p.79-87

2013

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Use of coping strategies in MND/ALS: Association with demographic and disease‐related characteristics

Acta neurologica Scandinavica, 2019-08, Vol.140 (2), p.131-139

2019

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Fit for purpose? A cross-sectional study to evaluate the acceptability and usability of HeadUp, a novel neck support collar for neurological neck weakness

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2021-01, Vol.22 (1-2), p.38-45

2021

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Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol

BMJ open, 2019-12, Vol.9 (12), p.e032364-e032364

2019

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Evaluating a novel cervical orthosis, the Sheffield Support Snood, in patients with amyotrophic lateral sclerosis/motor neuron disease with neck weakness

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2016-08, Vol.17 (5-6), p.436-442

2016

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The role of cranial and thoracic electromyography within diagnostic criteria for amyotrophic lateral sclerosis

Muscle & nerve, 2016-09, Vol.54 (3), p.378-385

2016

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Advances in symptom management and in monitoring disease progression in motor neuron disease

International review of neurobiology, 2024, Vol.176, p.119-169

2024

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The initiation of non-invasive ventilation for patients with motor neuron disease: Patient and carer perceptions of obstacles and outcomes

Amyotrophic lateral sclerosis and frontotemporal degeneration, 2013-03, Vol.14 (2), p.105-110

2013

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Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis

Survey of service needs to embed genome sequencing for motor neuron disease in neurology in the English National Health Service

Supporting people with Motor Neuron Disease (MND) to make decisions about gastrostomy feeding tube placement: a survey of UK healthcare professionals' practice and beliefs

Diagnosis and management of motor neurone disease

Development of a novel patient reported outcome measure for health-related quality of life in amyotrophic lateral sclerosis (PROQuALS): study protocol

Enteral feeding in neurological disorders

Analysis of incidence of motor neuron disease in England 1998-2019: use of three linked datasets

Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

Gastrostomy use in motor neurone disease (MND): A review, meta-analysis and survey of current practice

Cost‐effectiveness of acceptance and commitment therapy for people living with motor neuron disease, and their health‐related quality of life

Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre

Multicentre appraisal of amyotrophic lateral sclerosis biofluid biomarkers shows primacy of blood neurofilament light chain

Exploring patient and public involvement in motor neuron disease research

Longitudinal multi-modal muscle-based biomarker assessment in motor neuron disease

Impact of the covid-19 pandemic on amyotrophic lateral sclerosis care in the UK

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

The natural history of motor neuron disease: Assessing the impact of specialist care

Concurrence of multiple sclerosis and amyotrophic lateral sclerosis in patients with hexanucleotide repeat expansions of C9ORF72

Use of coping strategies in MND/ALS: Association with demographic and disease‐related characteristics

Fit for purpose? A cross-sectional study to evaluate the acceptability and usability of HeadUp, a novel neck support collar for neurological neck weakness

Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol

Evaluating a novel cervical orthosis, the Sheffield Support Snood, in patients with amyotrophic lateral sclerosis/motor neuron disease with neck weakness

The role of cranial and thoracic electromyography within diagnostic criteria for amyotrophic lateral sclerosis

Advances in symptom management and in monitoring disease progression in motor neuron disease

The initiation of non-invasive ventilation for patients with motor neuron disease: Patient and carer perceptions of obstacles and outcomes

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