Inclusion criteria, exclusion criteria and study summary
The MND Register for England, Wales and Northern Ireland is the first comprehensive source of information collected by healthcare professionals about people with MND. We have received approval under section 251 of the NHS act 2006 to allow authorised healthcare professions to collect patient data from those people resident in England and Wales without seeking consent from each patient to help us understand more about MND. We also collect data about people living in Northern Ireland without seeking consent from each patient but in this case the data shared is more limited. Why are you collecting my data? To count how many people currently have this disease at this remains unknown Establish where people with MND Live, to help improve care in those areas Collect detailed information to detect changes in rates of MND over time Identify best practice and improve patient care and outcomes What data is collected? If you are living in England or Wales your name, gender, date of birth, diagnosis, postcode, care and treatment you receive are collected from your medical records by a trained healthcare professional at your local MND clinic. If you are living in Northern Ireland, only your de-identified data (data that does not identify who you are) will be collected from your medical records by a trained healthcare professional at your local MND clinic and entered into a database. De-identified data includes your gender, year of birth, diagnosis, postcode district and care and treatment you receive. A full list of the data we collect can be found here via our website https://mndregister.ac.uk/dataset What happens to my data and how is it protected? A trained healthcare professional at your local MND clinic transfers your data via secure coded NHS email to the MND Register team. Your data is then stored on a secure platform at Kings College London, accessed by two members of the MND Register team for data cleaning, analysis and is used for research purposes. If you are resident in England or Wales some of your identifiable data (name, date of birth, NHS number, gender and postcode) in the MND Register database are used to link to other healthcare information held by NHS Digital, NHS Wales Informatics service and the Office for National Statistics. This enables us to look at care and access to services patients receive across England and Wales. We may also receive requests from other MND researchers who wish to obtain a copy of your de-identified data (data that does not identify who you are) to learn more about MND. This will include researchers outside the UK who would receive your data in an anonymised format and would be unable to identify you. What happens to my data and how is it protected? If you wish to be excluded from the MND Register please contact the MND Register team by email at mndregister@kcl.ac.uk Opting out does not impact your treatment or the standard of care your receive.
