If you do not wish for your data to be included in the MND Register you can opt-out. If you opt-out of us collecting your data this opt-out will remain in place unless you change your mind.
Opting out will not affect the standard of care or treatment you receive in any way.
Please bear in mind if you do opt-out that any data we have already collected and included in an existing dataset cannot be removed or erased.
This includes anonysmied data provided to researchers.
De-identified clinical information as required for national audit will still be submitted and remain part of the audit database but the MND Register will not be able to identify you, link your records or use your records in any research.
If you wish to opt-out, you can contact the MND Register team using the contact information below: