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Not yet recruiting NCT07393932

MND Together: Phase 1

— Observational MND (Motor Neurone DIsease)

For patients and families

In plain language

An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
The protocol lists: Not applicable- observational study.
Who it may be relevant to
Registry conditions: MND (Motor Neurone DIsease). Basic parameters: from 18 years · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
United Kingdom
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

Unsure about the terms? Read our patient guide →

Official title

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

Overview

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.

Interventions

  • Other Not applicable- observational study
    MND-Together tool will be informed by the findings from this study

Primary outcome measures

  • Number of barriers and facilitators for capability, opportunity and motivation (COM-B) [Time frame: February 2026- February 2027]

Eligibility criteria

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

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: Yes

Study design

Observational model
Case-only

Study locations

United Kingdom · 1 center
  • School of Medicine and Populational Health — Sheffield

Identifiers

NCT: NCT07393932 · R/186866

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗