Northern Ireland Motor Neurone Disease Biobank
Research type
Research Tissue Bank
IRAS ID
288621
Research summary
Northern Ireland Motor Neurone Disease Biobank
REC name
HSC REC A
REC reference
21/NI/0010
Date of REC Opinion
17 Feb 2021
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This biobank aims to investigate the potential causes and mechanisms of neural degeneration in patients with Motor Neurone Disease (MND). We will do this by collecting blood and urine samples from patients with MND, some disorders with similar clinical characteristics (e.g Spinal-bulbar muscular atrophy) and healthy controls in Northern Ireland. Study participants may elect to provide optional muscle, skin and cerebrospinal fluid samples. These samples will be taken at dedicated appointments in the Royal Victoria Hospital and Altnagelvin hospital. Patients with MND will also have measurements taken for their breathing and functional abilities through forced vital capacity and Amyotrophic Lateral Sclerosis functional rating scale measurements.
Research programme
These samples will be analysed by the neuromuscular research team, led by Dr Stephanie Duguez, at the Northern Ireland Centre for Stratified Medicine. They will be used to detect potential biomarkers and genetic abnormalities that could aid in the diagnosis of MND and help to understand and predict disease progression. Also, any identified biomarker could be used to monitor response to developing therapies for the condition in future clinical trials. The samples collected as part of this project will form a biobank, and researchers may apply to use them. These activities are necessary to accelerate research in MND.
Storage license
12064
RTBTitle
Northern Ireland Motor Neurone Disease Biobank
Establishment organisation
Northern Ireland Centre for Stratified Medicine, Ulster University
Establishment organisation address
C-TRIC, Altnagelvin Hospital campus
Glenshane Road
Derry
BT47 6SB