Northern Ireland Neuromuscular Disease Register
Research type
Research Database
IRAS ID
357398
Contact name
Gavin McCluskey
Contact email
Research summary
Northern Ireland Neuromuscular Disease Register
REC name
HSC REC A
REC reference
26/NI/0016
Date of REC Opinion
2 Mar 2026
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Cases will be identified through two main strategies. Patients who are under active review by the MND and neuromuscular clinical teams will be identified as part of routine clinical care. In addition, patients with relevant clinical diagnostic codes for neuromuscular disorders will be identified through encompass according to the processes already established within the Northern Ireland Health Analytics Platform (NIHAP). Patients identified through this method will have case notes reviewed by the MND and neuromuscular teams to determine suitability for inclusion in the register. This will serve the purpose of identifying patients who would benefit from specialist care from these teams as well as identifying participants to the register.
Data will be securely ingested from Epic, processed, and managed within the Azure-based NIHAP, which provides a centralised, secure infrastructure for handling data operations.Research programme
The NI Neuromuscular disease register aims to keep a record of all patients who are diagnosed with neuromuscular diseases in Northern Ireland. The register allows us to keep accurate data on how common different types of neuromuscular disease and Motor Neuron Disease (MND) are in Northern Ireland and therefore enable local epidemiological research of MND. It allows us to audit our work to ensure that we are meeting national standards. It will serve as a database to allow the NI MND and Neuromuscular Care Centres to have update records of patients with these conditions and improve co-ordination of care.
Research database title
Northern Ireland Neuromuscular Disease Register
Establishment organisation
Western Health and Social Care Trust
Establishment organisation address
Altnagelvin Area Hospital
Glenshane road
Derry
BT47 6SB