ALS-CarE
Research type
Research Study
Full title
A Programme for ALS Care in Europe (ALS-CarE)
IRAS ID
161654
Contact name
Christopher J McDermott
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundatoin Trust
Duration of Study in the UK
2 years, 2 months, 31 days
Research summary
Amyotrophic Lateral Sclerosis (ALS) also known as Motor Neurone Disease (MND) is a devastating neurological illness which leads to progressive muscle weakness and eventual death, usually within 3 years. Specialist multidisciplinary clinics provide disease-management and palliative care services aiming to alleviate symptoms, maximise function, and to improve quality of life by means of reducing psychological distress and maintaining the autonomy of patients as long as possible. The purpose of ALS-CarE is to map and understand the patient journey over the course of the disease and develop an integrated system of care that is available to people with MND, and their informal carers, at the correct time, in the correct format and in a cost effective manner.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
15/YH/0014
Date of REC Opinion
13 Feb 2015
REC opinion
Further Information Favourable Opinion