An observational study in MND (Motor Neurone DIsease), sponsored by University of Sheffield. Not yet recruiting at 1 site in United Kingdom. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-02-06.
Sponsored by University of Sheffield · Observational
This project consists of two workstreams, both of which will be mixed-methods and aim to develop a national UK picture of current care coordination for people with MND, including observations of barriers and facilitators. The studies will explore how care is transferred and communicated across MND specialist services to non-specialist community health settings.
In workstream 1, the researchers will conduct focus groups with people with MND, Carers, former Carers, Health and Social Care Professionals and managers and commissioners. These focus groups, alongside the analysis of routine data, will create a national picture of MND care and begin a behavioural diagnosis of the barriers and facilitators. In workstream 2, a multi-site ethnography study will be conducted, including observations, interviews, routine data, care plan and document review. This Workstream will observe how care is coordinated between specialist and non-specialist services and continue to explore barriers and facilitators that can not be identified through interviews.
978 studies on the registry are indexed under Amyotrophic Lateral Sclerosis; 277 are open to participants now.
This study's planned enrollment of 287 is above the median of 108 across 265 observational studies indexed under Amyotrophic Lateral Sclerosis.
Browse Amyotrophic Lateral Sclerosis studies →University of Sheffield is the lead sponsor of 75 studies on the registry; 16 are open to participants now.
Counted across the registry records on this site, refreshed daily.
People attending MND specialist centres and non specialist community services
WS1
Inclusion Criteria:
Exclusion Criteria:
WS2
Inclusion Criteria:
Exclusion Criteria:
MND-Together tool will be informed by the findings from this study
Number of barriers and facilitators for capability, opportunity and motivation (COM-B)
Time frame: February 2026- February 2027
Plan to share: Yes — The pseudo-anonymised data, and analysis output will be uploaded to the University of Sheffield data repository, ORDA, and stored for 10 years as per the University of Sheffield Retention Schedule. The data will be embargoed until the study has been published in a peer-reviewed journal and will be available thereafter to other researchers upon reasonable request to the CI.
Time frame: After the study has been published in a peer-review journal and it will be kept on the data repository for 10 years
No publications or documents are linked to this record.
Start is estimated for Feb 2026; primary completion for Dec 2026, 10 months later.
Of 127 non-industry observational studies under Amyotrophic Lateral Sclerosis, half reached primary completion within 67 months of starting (the median), counting those still running; a quarter within 30 and three quarters within 125. This study's planned 10 months is below that.
Counting every sponsor, half of 136 studies reached it within 64 months; a quarter within 29 and three quarters within 114.
How these figures are worked out, and which studies are left out of them.
This study is not yet recruiting, as verified in Jan 2026. You cannot join it, but the record below documents what was studied.
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Amyotrophic Lateral Sclerosis →
University of Sheffield