Driving policy with data: A longterm sustainable specialist service for amyotrophic lateral sclerosis

The JPND-funded project ALS-CarE is coordinated by the Irish partner, and has collected detailed information across 5 different countries about the Amyotrophic Lateral Sclerosis (ALS) patient and caregiver journey from ALS diagnosis through to end of life. In Ireland, we have collected extensive quantitiative and qualitative data from 159 complete patient and caregiver journeys, and have compared the clinical management with "best practice" based on international guidelines. Analysis of our data has identified 3 main areas in which there are important gaps in the delivery of service, and where the experience of patients and caregivers could be enhanced. These include (1) The funding model for services . There is a risk to long term sustainability of ALS/MND services in Ireland, as the Specialist Clinic is supported primarily from research grants, and the integrated community care is provided by a voluntary organization that must fundraise to support critical specialist nursing posts; (2) The need for timely diagnosis for patients, followed by early referral to the specialist multidisciplinary clinic (reduces costs, and increases chance of recruitment into ongoing clinical trials) and (3) The need to disseminate information regarding best practice in clinical management. This proposal will address these gaps by generating a detailed data-driven business plan for submission to the National Hospitals Office in support of long term funding of ALS/MND services. In addition, we will implement a process to help reduce the diagnostic delays experienced by patients, and will disseminate a new web based algorithm for evidence based clinical management.


Award Date
28 September 2017
Award Value
Principal Investigator
Professor Orla Hardiman
Host Institution
Trinity College Dublin
Knowledge Exchange and Dissemination Scheme