NCT07393932

Brief Summary

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.

Trial Health

63
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
287

participants targeted

Target at P75+ for all trials

Timeline
6mo left

Started Feb 2026

Shorter than P25 for all trials

Geographic Reach
1 country

1 active site

Status
not yet recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress50%
Feb 2026Feb 2027

First Submitted

Initial submission to the registry

January 15, 2026

Completed
17 days until next milestone

Study Start

First participant enrolled

February 1, 2026

Completed
5 days until next milestone

First Posted

Study publicly available on registry

February 6, 2026

Completed
10 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 1, 2026

Expected
2 months until next milestone

Study Completion

Last participant's last visit for all outcomes

February 1, 2027

Last Updated

February 6, 2026

Status Verified

January 1, 2026

Enrollment Period

10 months

First QC Date

January 15, 2026

Last Update Submit

January 30, 2026

Conditions

MND (Motor Neurone DIsease)

Keywords

MNDCare coordinationhealth and social caremultidisciplinary carecommunity servicesMotor Neurone DiseaseNeurological conditionsethnographyAmyotrophic lateral sclerosis (ALS)Qualitative

Outcome Measures

Primary Outcomes (1)

  • Number of barriers and facilitators for capability, opportunity and motivation (COM-B)

    February 2026- February 2027

Interventions

Not applicable- observational studyOTHER

MND-Together tool will be informed by the findings from this study

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

People attending MND specialist centres and non specialist community services

You may qualify if:

  • 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

You may not qualify if:

  • WS2
  • Person with MND, carers, former carers, Health and Social Care Professionals, managers and commissioners
  • Ability to engage in an observations and interviews

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

School of Medicine and Populational Health

Sheffield, Yorkshire, United Kingdom

Location

MeSH Terms

Conditions

Amyotrophic Lateral Sclerosis

Condition Hierarchy (Ancestors)

Spinal Cord DiseasesCentral Nervous System DiseasesNervous System DiseasesMotor Neuron DiseaseNeurodegenerative DiseasesTDP-43 ProteinopathiesNeuromuscular DiseasesProteostasis DeficienciesMetabolic DiseasesNutritional and Metabolic Diseases

Study Officials

  • Liam Knox, PhD

    University of Sheffield

    PRINCIPAL INVESTIGATOR

  • Chris McDermott, MBChB, FRCP, PhD

    University of Sheffield

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Liam Knox, PhD

CONTACT

+441142222291l.knox@sheffield.ac.uk

Chris McDermott, MBChB, FRCP, PhD

CONTACT

+44 1142222295c.j.mcdermott@sheffield.ac.uk

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

January 15, 2026

First Posted

February 6, 2026

Study Start

February 1, 2026

Primary Completion (Estimated)

December 1, 2026

Study Completion (Estimated)

February 1, 2027

Last Updated

February 6, 2026

Record last verified: 2026-01

Data Sharing

IPD Sharing
Will share

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

Locations

GB(1)