ALS (Amyotrophic Lateral Sclerosis) Clinical Trial
— ALS-CarEOfficial title:
A Programme for Amyotrophic Lateral Sclerosis Care in Europe
Verified date | August 2017 |
Source | Sheffield Teaching Hospitals NHS Foundation Trust |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Observational |
Amyotrophic Lateral Sclerosis (ALS) or else known as Motor Neurone Disease (MND) 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 this study is to use existing information drawn from partner countries into a system of care that is available to people with amyotrophic lateral sclerosis 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 amyotrophic lateral sclerosis that can be modified for management of other related degenerative diseases of the nervous system.
Status | Active, not recruiting |
Enrollment | 115 |
Est. completion date | March 31, 2018 |
Est. primary completion date | March 31, 2018 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 18 Years and older |
Eligibility |
Inclusion Criteria: - A diagnosis of definite, probable, laboratory supported or possible ALS according to the El Escorial criteria. Exclusion Criteria: - Patient cognitive impairment to the extent that they cannot complete an informed consent process |
Country | Name | City | State |
---|---|---|---|
United Kingdom | Sheffield Institute for Translational Neuroscience | Sheffield | South Yorkshire |
Lead Sponsor | Collaborator |
---|---|
Sheffield Teaching Hospitals NHS Foundation Trust |
United Kingdom,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Calculation of quality-adjusted life years (QALYs) that are used to inform economic evaluations of health care interventions using the EuroQoL validated EQ-5D-5L questionnaire. | Two potential service changes will be identified through examination of the patient journey and through the review of discordance with existing best practice guidelines. Key areas of interest are likely to be focussed around the organisation and delivery of services for gastrostomy, non-invasive ventilation, management of cognitive and behavioural impairment, and the involvement of specialised palliative care teams. The precise methods used will be determined on consideration of the types of intervention and types of data available, but are likely to include case-matching and/or more sophisticated statistical methods such as logistic regression or propensity scoring. | 4 years |
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