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| Name | Class |
|---|---|
| National Institute for Health Research, United Kingdom | OTHER_GOV |
| Liverpool John Moores University | OTHER |
| Sheffield Teaching Hospitals NHS Foundation Trust | OTHER |
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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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Not applicable- observational study | Other | MND-Together tool will be informed by the findings from this study |
| Measure | Description | Time Frame |
|---|---|---|
| Number of barriers and facilitators for capability, opportunity and motivation (COM-B) | February 2026- February 2027 |
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WS1
Inclusion Criteria:
Exclusion Criteria:
WS2
Inclusion Criteria:
Exclusion Criteria:
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People attending MND specialist centres and non specialist community services
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Liam Knox, PhD | Contact | +441142222291 | l.knox@sheffield.ac.uk | |
| Chris McDermott, MBChB, FRCP, PhD | Contact | +44 1142222295 | c.j.mcdermott@sheffield.ac.uk |
| Name | Affiliation | Role |
|---|---|---|
| Liam Knox, PhD | University of Sheffield | Principal Investigator |
| Chris McDermott, MBChB, FRCP, PhD | University of Sheffield | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| School of Medicine and Populational Health | Sheffield | Yorkshire | United Kingdom |
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.
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After the study has been published in a peer-review journal and it will be kept on the data repository for 10 years
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| ID | Term |
|---|---|
| D000690 | Amyotrophic Lateral Sclerosis |
| ID | Term |
|---|---|
| D013118 | Spinal Cord Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D016472 | Motor Neuron Disease |
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| Cornwall Partnership NHS Foundation Trust |
| NETWORK |
| Northern Lincolnshire and Goole Hospitals NHS Foundation Trust | OTHER |
| Dementias Platform UK | UNKNOWN |
| NIHR HealthTech Research Centre | UNKNOWN |
| Swansea Bay University Health Board | OTHER |
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| D019636 | Neurodegenerative Diseases |
| D057177 | TDP-43 Proteinopathies |
| D009468 | Neuromuscular Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |