Publications by authors named "Chris Mcdermott"
The ALSFRS-R Summit: a global call to action on the use of the ALSFRS-R in ALS clinical trials.
Amyotroph Lateral Scler Frontotemporal Degener
May 2024
Article Synopsis
- The ALSFRS, originally developed over 25 years ago, is used to track functional changes in ALS patients and has been adapted to create the ALSFRS-R for clinical trials, though it hasn't been fully re-validated.
- A group of clinical trialists met to discuss ways to enhance the ALSFRS-R and consider alternative measures for clinical research.
- The report emphasizes three key actions: standardizing ALSFRS-R usage worldwide, agreeing on clinical trial design and statistical analysis recommendations, and incorporating additional outcome measures.
Article Synopsis
- Amyotrophic lateral sclerosis (ALS) is a severe neurodegenerative disease that is often diagnosed late, making timely diagnosis critical for effective treatment.
- Factors contributing to diagnostic delays include general practitioners' lack of awareness of ALS, leading to misdiagnoses and unnecessary tests, particularly for patients with limb-onset symptoms.
- Improved ALS diagnosis can enhance patient care and access to new therapies, so strategies and diagnostic tools are needed for general practitioners to recognize and refer suspected ALS cases promptly.
Introduction: To capture the patient's attitude toward remote monitoring of motor neuron disease (MND) in care and clinical trials, and their concerns and preferences regarding the use of digital technology.
Methods: We performed an international multi-centre survey study in three MND clinics in The Netherlands, the United Kingdom, and Australia. The survey was co-developed by investigators and patients with MND, and sent to patients by e-mail or postal-mail.
Correlations between measures of ALS respiratory function: is there an alternative to FVC?
Amyotroph Lateral Scler Frontotemporal Degener
November 2021
An ongoing longitudinal study in six European sites includes a 3-monthly assessment of forced vital capacity (FVC), slow vital capacity (SVC), peak cough flow (PCF), and Sniff nasal inspiratory pressure (SNIP). The aim of this interim analysis was to assess the potential for SNIP to be a surrogate for aerosol generating procedures given COVID-19 related restrictions. : This was a prospective observational study.
View Article and Find Full Text PDFCosts of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool.
BMJ Support Palliat Care
September 2019
Background: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire.
View Article and Find Full Text PDFEvidence-based or arrogance-based medicine?
Amyotroph Lateral Scler Frontotemporal Degener
August 2016
Background: Ventilatory support has benefits including prolonging survival for respiratory failure in motor neurone disease (MND). At some point some patients may wish to stop the intervention. The National Institute of Health and Care Excellence (NICE) guidance recommends research is needed on ventilation withdrawal.
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