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The U.K. NorthStar Clinical Network
Sponsor: University College, London
Summary
The goal of this natural history study is to capture the natural history of Duchenne Muscular Dystrophy (DMD) in children and adults in the United Kingdom. Children and adults with DMD will be invited to join. The primary objective of the study is to collect longitudinal data on motor and respiratory function in DMD patients from childhood to adulthood. The secondary objectives of the study include collection of longitudinal data on other aspects of natural history on DMD, including respiratory, cardiac and endocrine complications, neurodiversity (cognitive impairment, neuro-behavioural disorders such as ADHD and autism), changes to bone density and occurrence of fractures, changes to puberty, incidence of scoliosis, unplanned hospital admissions, and quality of life. The study will also collect information on ethnicity. Participants will attend an annual or bi-annual neuromuscular clinic, and will have a series of assessments and questionnaires with the study team. These include: key medical data, physiotherapy data, respiratory assessments, Quality of Life questionnaires, and DMD questionnaires. Following assessments and questionnaire completion, data is input into the study's tailor-made National Neuromuscular Database.
Official title: Natural History and Standards of Care in Duchenne Muscular Dystrophy - the U.K. NorthStar Clinical Network.
Key Details
Gender
MALE
Age Range
Any - 99 Years
Study Type
OBSERVATIONAL
Enrollment
300
Start Date
2024-12-01
Completion Date
2025-06-30
Last Updated
2024-12-02
Healthy Volunteers
No
Conditions
Locations (26)
Aberdeen, NHS Grampian
Aberdeen, United Kingdom
Belfast Health and Social Care Trust
Belfast, United Kingdom
Birmingham Children's Hospital
Birmingham, United Kingdom
Birmingham Community Healthcare NHS Foundation Trust
Birmingham, United Kingdom
Birmingham Heartlands Hospital
Birmingham, United Kingdom
University Hospitals Bristol and Weston
Bristol, United Kingdom
Cambridge University Hospitals
Cambridge, United Kingdom
Cardiff and Vale University Health Board
Cardiff, United Kingdom
NHS Dundee - Tayside
Dundee, United Kingdom
NHS Greater Glasgow and Clyde
Glasgow, United Kingdom
Lancashire Teaching Hospitals NHS Foundation Trust
Lancaster, United Kingdom
Leeds Teaching Hospitals NHS Trust
Leeds, United Kingdom
University Hospitals of Leicester NHS Trust
Leicester, United Kingdom
Alder Hey Children's Hospital Trust
Liverpool, United Kingdom
Great Ormond Street Hospital for Children NHS Foundation Trust
London, United Kingdom
Evelina London Children's Hospital
London, United Kingdom
Great Ormond Street Hospital for Children NHS Foundation Trust
London, United Kingdom
Manchester University NHS Foundation Trust
Manchester, United Kingdom
Newcastle Hospitals NHS Foundation Trust
Newcastle, United Kingdom
Nottingham University Hospitals NHS Trust
Nottingham, United Kingdom
The Robert Jones and Agnes Hunt Orthopaedic Hospital
Oswestry, United Kingdom
Oxford University Hospitals
Oxford, United Kingdom
University Hospitals Plymouth NHS Trust
Plymouth, United Kingdom
Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield, United Kingdom
University Hospital Southampton NHS Foundation Trust
Southampton, United Kingdom
Swansea Bay University Health Board
Swansea, United Kingdom