Northern Ireland Motor Neurone Disease Register 2020
Research type
Research Database
IRAS ID
286400
Contact name
Karen Morrison
Contact email
Research summary
Northern Ireland Motor Neurone Disease Register
REC name
HSC REC B
REC reference
20/NI/0122
Date of REC Opinion
1 Dec 2020
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This register aims to collect demographic and clinical information on all patients diagnosed with Motor Neurone Disease (MND) in Northern Ireland. This will take place alongside routine clinical care. All patients with MND are routinely referred to the NI MND Care Centre held in the BHSCT and therefore patient ascertainment approximates 100%. The MND team will record the data after obtaining informed consent. The data will be recorded in a microsoft structured query language (SQL) database and backed up to the BHSCT server. The database is maintained by medical physics agency in the BHSCT.
Research programme
This database provides important clinical and epidemiological data to The NI MND team to allow for improved clinical care of patients with MND and local research. We also collaborate with the MND team in Beaumont Hosptial Dublin (which hold the Irish MND database) to provide all-Ireland epidemiological and clinical data.
Research database title
Northern Ireland Motor Neurone Disease Register