Theresa Walsh

Mary Brennan (1852)

Theresa Walsh

Further development of a patient-reported outcome measure to assess the impact of oral secretion problems in people living with MND

Sarah Boddy, Rebecca Simpson, Stephen J. Walters, Theresa Walsh et autres

Objective: Oral secretion problems are common yet poorly managed in people living with MND (plwMND). A validated patient-reported outcome for measuring saliva symptoms in this patient group would facilitate better monitoring of individuals. This study aimed to assess the validity, reliability and …

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Estimating the minimum important difference in the ALSFRS-R-instrument in people living with MND

Sarah Boddy, Rebecca Simpson, Stephen J. Walters, Hannah Bamford et autres

Objective: The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) is a commonly used outcome measure in clinical trials for motor neuron disease (MND) therapies. As such, understanding how differences in scores relate to patient perception of their disease status is important when …

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Conducting longitudinal cohort research in secondary schools: Insights from the Born in Bradford Age of Wonder study

Katy Shire, Alex Newsham, Atıf Rahman, Dan Mason et autres

Background Adolescence is a critical period of development which paves the way for longer term health trajectories and lifestyles. Understanding the variety of factors which influence adolescent health is crucial to developing interventions and services which have the potential to influence health …

Born in Bradford’s Age of Wonder cohort: protocol for adolescent data collection

Katy Shire, Alex Newsham, Atıf Rahman, Dan Mason et autres

Background: Adolescence and transition into adulthood are periods shaping life-long mental health, cardiometabolic risk, and inequalities. However, they are poorly studied and understood. By extending and expanding the Born in Bradford (BiB) cohort study through this period using innovative, co-produced approaches to …

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A randomized double-blind clinical trial on safety and efficacy of tauroursodeoxycholic acid (TUDCA) as add-on treatment in patients affected by amyotrophic lateral sclerosis (ALS): the statistical analysis plan of TUDCA-ALS trial

Flavia Lombardo, Stefania Spila Alegiani, Flávia Mayer, Marta Cipriani et autres

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a highly debilitating neurodegenerative condition. Despite recent advancements in understanding the molecular mechanisms underlying ALS, there have been no significant improvements in therapeutic options for ALS patients in recent years. Currently, there is no cure for …

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

Esther Hobson, Wendy Baird, Mike Bradburn, Cindy Cooper et autres

OBJECTIVES: To evaluate the processes involved in using a novel digitally enabled healthcare system (telehealth in motor neuron disease (TiM)) in people living with motor neuron disease (MND) and their informal carers. We examined TiM implementation, potential mechanisms of impact and contextual …

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

Esther Hobson, Wendy Baird, Mike Bradburn, Cindy Cooper et autres

OBJECTIVES: Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth …

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Mutations in the Glycosyltransferase Domain of GLT8D1 Are Associated with Familial Amyotrophic Lateral Sclerosis

Johnathan Cooper‐Knock, Tobias Moll, Tennore Ramesh, Lydia M. Castelli et autres

Amyotrophic lateral sclerosis (ALS) is a severe neurodegenerative disorder without effective neuroprotective therapy. Known genetic variants impair pathways, including RNA processing, axonal transport, and protein homeostasis. We report ALS-causing mutations within the gene encoding the glycosyltransferase GLT8D1. Exome sequencing in an autosomal-dominant …

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The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design

Esther Hobson, Wendy Baird, Rebecca Partridge, Cindy Cooper et autres

OBJECTIVES: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that …

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Mutations in the Glycosyltransferase Domain of GLT8D1 Cause Amyotrophic Lateral Sclerosis

Johnathan Cooper‐Knock, Tobias Moll, Tennore Ramesh, Lydia M. Castelli et autres

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PO227 A clinical trial of telehealth to improve timely access to specialist care

Esther Hobson, Mike Bradburn, Wendy Baird, Cindy Cooper et autres

Specialist multidisciplinary care is associated with increased survival. We developed a telehealth system to improve access to specialist care and reduce the burden of travel to specialist centres. We explored the feasibility of telehealth and the feasibility in a motor neurone disease …

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