MND Register

The MND Register of England, Wales and Northern Ireland (‘the MND Register’) is a research study funded by the MND Association.  The study is led by Professor Ammar Al-Chalabi at King’s College London and by Professor Kevin Talbot at Oxford University. It will collect information about every person living with MND.
Study titleMND Register for England, Wales and Northern Ireland
UK Chief InvestigatorProfessor Ammar Al-Chalabi
Research summaryMotor neuron disease (MND) affects about 5000 people in the UK at any one time, but the true figure is not known as there is no single source of information about who is affected. The purpose of the study is to collect and store information about every person with MND in the UK. Counting every person with MND allows us to work out the number of people diagnosed with MND per year, how many people currently have the disease and how this is changing with time. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND. We will also collect information about where people with MND live to allow for planning the care of people with MND to take place. It will also tell researchers more about the possible causes of MND. We collect information about the disease itself, for example, where patients first noticed symptoms, so we can look at how this relates to disease progression.
Inclusion/exclusion criteriaInclusion Criteria:
The study must be connected to this condition or its treatment. The participants will have motor neuron disease, diagnosed by a consultant with expertise in neurological disease. Approximately 5% of these people will have Frontotemporal Dementia.

Exclusion Criteria:
The only inclusion criterion for participation is that data contributors must be a service that diagnoses or manages people with MND.

NOTE: Other protocol defined Inclusion/Exclusion criteria may apply.
Current statusActive – recruiting
LocationsBARTS HEALTH NHS TRUST
BRIGHTON AND SUSSEX UNIVERSITY HOSPITALS NHS TRUST
ADDENBROOKE'S HOSPITAL
DARENT VALLEY HOSPITAL
UNIVERSITY HOSPITALS OF DERBY AND BURTON NHS FOUNDATION TRUST
EAST KENT HOSPITALS UNIVERSITY NHS FOUNDATION TRUST
GLOUCESTERSHIRE CARE SERVICES NHS TRUST
KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST
LANCASHIRE TEACHING HOSPITALS NHS FOUNDATION TRUST
PHYLLIS TUCKWELL HOSPICE
NORFOLK & NORWICH UNIVERSITY HOSPITAL
FRENCHAY HOSPITAL
JOHN RADCLIFFE HOSPITAL
UNIVERSITY HOSPITALS PLYMOUTH NHS TRUST
PLYMOUTH HOSPITALS NHS TRUST
POOLE HOSPITAL NHS FOUNDATION TRUST
ROYAL FREE HOSPITAL
SALFORD ROYAL NHS FOUNDATION TRUST
ROYAL HALLAMSHIRE HOSPITAL
THE JAMES COOK UNIVERSITY HOSPITAL
ST GEORGE'S UNIVERSITY HOSPITALS NHS FOUNDATION TRUST
THE ROYAL VICTORIA INFIRMARY
UNIVERSITY COLLEGE HOSPITAL
Contact detailsLynn Ossher
Email: lynn.ossher@ndcn.ox.ac.uk, phone: 01865 227714
Recruitment group(s)Patients with MND
Recruitment target(s)950 patients.
Key datesStudy start date: 01 April 2016
Target study completion date: 01 September 2019
Funder(s)MND Association
SponsorKing's College London
Study designResearch Databaase
Intervention (if applicable)N/A
Phase (if applicable)N/A
Outcome measuresThe information collected in this project is intended as a resource for researchers.
We will be able to share anonymised datasets with researchers. We can only share data if the proposed use of the data is discussed and agreed by the data access committee and there is a data-sharing agreement in place.
Publications / Results reportsLinks to publications will be made available here.
Participant Information SheetDownload here