Ignite Creation Date:
2026-03-26 @ 3:16 PM
Ignite Modification Date:
2026-03-30 @ 12:16 AM
Study NCT ID:
NCT07393932
Status:
NOT_YET_RECRUITING
Last Update Posted:
2026-02-06
First Post:
2026-01-15
Is NOT Gene Therapy:
True
Has Adverse Events:
False
Brief Title:
MND Together: Phase 1
Sponsor:
Organization:
Raw JSON
{'hasResults': False, 'derivedSection': {'miscInfoModule': {'versionHolder': '2026-03-25'}, 'conditionBrowseModule': {'meshes': [{'id': 'D000690', 'term': 'Amyotrophic Lateral Sclerosis'}], 'ancestors': [{'id': 'D013118', 'term': 'Spinal Cord Diseases'}, {'id': 'D002493', 'term': 'Central Nervous System Diseases'}, {'id': 'D009422', 'term': 'Nervous System Diseases'}, {'id': 'D016472', 'term': 'Motor Neuron Disease'}, {'id': 'D019636', 'term': 'Neurodegenerative Diseases'}, {'id': 'D057177', 'term': 'TDP-43 Proteinopathies'}, {'id': 'D009468', 'term': 'Neuromuscular Diseases'}, {'id': 'D057165', 'term': 'Proteostasis Deficiencies'}, {'id': 'D008659', 'term': 'Metabolic Diseases'}, {'id': 'D009750', 'term': 'Nutritional and Metabolic Diseases'}]}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'OTHER', 'observationalModel': 'CASE_ONLY'}, 'enrollmentInfo': {'type': 'ESTIMATED', 'count': 287}, 'patientRegistry': False}, 'statusModule': {'overallStatus': 'NOT_YET_RECRUITING', 'startDateStruct': {'date': '2026-02', 'type': 'ESTIMATED'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2026-01', 'completionDateStruct': {'date': '2027-02', 'type': 'ESTIMATED'}, 'lastUpdateSubmitDate': '2026-01-30', 'studyFirstSubmitDate': '2026-01-15', 'studyFirstSubmitQcDate': '2026-01-30', 'lastUpdatePostDateStruct': {'date': '2026-02-06', 'type': 'ACTUAL'}, 'studyFirstPostDateStruct': {'date': '2026-02-06', 'type': 'ACTUAL'}, 'primaryCompletionDateStruct': {'date': '2026-12', 'type': 'ESTIMATED'}}, 'outcomesModule': {'primaryOutcomes': [{'measure': 'Number of barriers and facilitators for capability, opportunity and motivation (COM-B)', 'timeFrame': 'February 2026- February 2027'}]}, 'oversightModule': {'oversightHasDmc': True, 'isFdaRegulatedDrug': False, 'isFdaRegulatedDevice': False}, 'conditionsModule': {'keywords': ['MND', 'Care coordination', 'health and social care', 'multidisciplinary care', 'community services', 'Motor Neurone Disease', 'Neurological conditions', 'ethnography', 'Amyotrophic lateral sclerosis (ALS)', 'Qualitative'], 'conditions': ['MND (Motor Neurone DIsease)']}, 'descriptionModule': {'briefSummary': '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.\n\nIn 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.'}, 'eligibilityModule': {'sex': 'ALL', 'stdAges': ['ADULT', 'OLDER_ADULT'], 'minimumAge': '18 Years', 'samplingMethod': 'NON_PROBABILITY_SAMPLE', 'studyPopulation': 'People attending MND specialist centres and non specialist community services', 'healthyVolunteers': True, 'eligibilityCriteria': 'WS1\n\nInclusion Criteria:\n\n* Person with MND, carers, former carers, Health and Social Care Professionals, managers and commissioners\n* Ability to engage in focus group or interview or email interview\n\nExclusion Criteria:\n\n* no exclusion criteria\n\nWS2\n\nInclusion Criteria:\n\n* Person with MND, carers, former carers, Health and Social Care Professionals, managers and commissioners\n* Ability to engage in an observations and interviews\n\nExclusion Criteria:\n\n* no exclusion criteria'}, 'identificationModule': {'nctId': 'NCT07393932', 'briefTitle': 'MND Together: Phase 1', 'organization': {'class': 'OTHER', 'fullName': 'University of Sheffield'}, 'officialTitle': 'MND Together: Improving Communication and Coordination of Motor Neuron Disease Care', 'orgStudyIdInfo': {'id': 'R/186866'}}, 'armsInterventionsModule': {'interventions': [{'name': 'Not applicable- observational study', 'type': 'OTHER', 'description': 'MND-Together tool will be informed by the findings from this study'}]}, 'contactsLocationsModule': {'locations': [{'city': 'Sheffield', 'state': 'Yorkshire', 'country': 'United Kingdom', 'contacts': [{'name': 'Liam Knox, PhD', 'role': 'CONTACT', 'email': 'l.knox@sheffield.ac.uk', 'phone': '+44 1142222291'}, {'name': 'Chris McDermott, MBChB, FRCP, PhD', 'role': 'CONTACT', 'email': 'c.j.mcdermott@sheffield.ac.uk', 'phone': '+44 114 222 2295'}], 'facility': 'School of Medicine and Populational Health', 'geoPoint': {'lat': 53.38297, 'lon': -1.4659}}], 'centralContacts': [{'name': 'Liam Knox, PhD', 'role': 'CONTACT', 'email': 'l.knox@sheffield.ac.uk', 'phone': '+441142222291'}, {'name': 'Chris McDermott, MBChB, FRCP, PhD', 'role': 'CONTACT', 'email': 'c.j.mcdermott@sheffield.ac.uk', 'phone': '+44 1142222295'}], 'overallOfficials': [{'name': 'Liam Knox, PhD', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'University of Sheffield'}, {'name': 'Chris McDermott, MBChB, FRCP, PhD', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'University of Sheffield'}]}, 'ipdSharingStatementModule': {'timeFrame': 'After the study has been published in a peer-review journal and it will be kept on the data repository for 10 years', 'ipdSharing': 'YES', '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.'}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'University of Sheffield', 'class': 'OTHER'}, 'collaborators': [{'name': 'National Institute for Health Research, United Kingdom', 'class': 'OTHER_GOV'}, {'name': 'Liverpool John Moores University', 'class': 'OTHER'}, {'name': 'Sheffield Teaching Hospitals NHS Foundation Trust', 'class': 'OTHER'}, {'name': 'Cornwall Partnership NHS Foundation Trust', 'class': 'NETWORK'}, {'name': 'Northern Lincolnshire and Goole Hospitals NHS Foundation Trust', 'class': 'OTHER'}, {'name': 'Dementias Platform UK', 'class': 'UNKNOWN'}, {'name': 'NIHR HealthTech Research Centre', 'class': 'UNKNOWN'}, {'name': 'Swansea Bay University Health Board', 'class': 'OTHER'}], 'responsibleParty': {'type': 'SPONSOR'}}}}