MND Together: Phase 1

January 30, 2026 updated by: University of Sheffield

MND Together: Improving Communication and Coordination of Motor Neuron Disease Care

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.

Study Overview

Status

Not yet recruiting

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Estimated)

287

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

Yes

Sampling Method

Non-Probability Sample

Study Population

People attending MND specialist centres and non specialist community services

Description

WS1

Inclusion Criteria:

  • Person with MND, carers, former carers, Health and Social Care Professionals, managers and commissioners
  • Ability to engage in focus group or interview or email interview

Exclusion Criteria:

  • no exclusion criteria

WS2

Inclusion Criteria:

  • Person with MND, carers, former carers, Health and Social Care Professionals, managers and commissioners
  • Ability to engage in an observations and interviews

Exclusion Criteria:

  • no exclusion criteria

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
Number of barriers and facilitators for capability, opportunity and motivation (COM-B)
Time Frame: February 2026- February 2027
February 2026- February 2027

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Sheffield

Collaborators

Sheffield Teaching Hospitals NHS Foundation Trust
Liverpool John Moores University
National Institute for Health Research, United Kingdom
Northern Lincolnshire and Goole Hospitals NHS Foundation Trust
Swansea Bay University Health Board
Dementias Platform UK
Cornwall Partnership NHS Foundation Trust
NIHR HealthTech Research Centre

Investigators

  • Principal Investigator: Chris McDermott, MBChB, FRCP, PhD, University of Sheffield
  • Principal Investigator: Liam Knox, PhD, University of Sheffield

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Estimated)

February 1, 2026

Primary Completion (Estimated)

December 1, 2026

Study Completion (Estimated)

February 1, 2027

Study Registration Dates

First Submitted

January 15, 2026

First Submitted That Met QC Criteria

January 30, 2026

First Posted (Actual)

February 6, 2026

Study Record Updates

Last Update Posted (Actual)

February 6, 2026

Last Update Submitted That Met QC Criteria

January 30, 2026

Last Verified

January 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • R/186866

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

YES

IPD Plan Description

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.

IPD Sharing 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

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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