|Study title||MND Register for England, Wales and Northern Ireland|
|UK Chief Investigator||Professor Ammar Al-Chalabi|
|Research summary||Motor 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 criteria||Inclusion 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.
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 status||Active – recruiting|
Gloucestershire (Community Care)
London (King's College Hospital)
London (St George's Hospital, Tooting)
|Contact details||Lynn Ossher
Email: firstname.lastname@example.org, phone: 01865 227714
|Recruitment group(s)||Patients with MND|
|Recruitment target(s)||950 patients.|
|Key dates||Study start date: 01 April 2016
Planned recruitment end date: 01 February 2021
|Sponsor||King's College London|
|Study design||Research Databaase|
|Intervention (if applicable)||N/A|
|Phase (if applicable)||N/A|
|Outcome measures||The 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 reports||Links to publications will be made available here.|
|Participant Information Sheet||Download here|