Project: A Programme for ALS Care in Europe

Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive fatal neurological disease that strikes in the prime of life, and for which there is no treatment. The principal aim of management is to maintain quality of life and reduce the symptoms of the disease. This requires a multidisciplinary approach using best practice for symptom alleviation, including innovation approaches towards maximising quality of life. The purpose of ALS-CarE is to use existing information drawn from partner countries into a system of care that is available to people with ALS at the correct time, in the correct format and in a cost effective manner. This will be achieved by collecting details of patient and carer experiences across all stages of from diagnosis to end of life, including decision making in the terminal stages of the disease. A health economic analysis will help to identify the overall costs of disease management, provide models of increased efficiency that preserve and maximize quality of life, and begin to develop novel health economic measurement tools for terminal neurological illness. The completed project will provide a user-friendly best practice programme for ALS that can be modified for management of other related degenerative diseases of the nervous system.

Acronym ALS-CarE (Reference Number: JPND_HC-559-011)
Duration 01/01/2014 - 01/01/2017
Project Topic Neurodegenerative disease
Website visit project website
Network JPND
Call European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases.

Project partner

Number Name Role Country
1 The Provost, Fellows, Foundation Scholars, and other members of Board, of the College of the Holy and Undivided Trinity of Queen Elizabeth near Dublin Coordinator Ireland
2 University Medical Centre Utrecht Partner Netherlands
3 King's College London Partner United Kingdom
4 University of Sheffield Partner United Kingdom
5 University of Turin Partner Italy
6 Charité – Universitätsmedizin Berlin Partner Germany
7 Technical University of Munich Partner Germany
8 Katholieke Universiteit Leuven Partner Belgium