NMOSD database
Research type
Research Database
IRAS ID
278736
Contact name
Athanasios Papathanasiou
Contact email
Research summary
Neuromyelitis Optica Spectrum Disorders (NMOSD), including patients with myelin-oligodendrocyte glycoptorein (MOG) antibodies
REC name
West of Scotland REC 4
REC reference
21/WS/0049
Date of REC Opinion
22 Jun 2021
REC opinion
Further Information Favourable Opinion
Data collection arrangements
NMOSD is a rare and treatable condition that recently encompassed patients with MOG-antibodies.We are still not aware of the full clinical spectrum that covers NMOSD.
Here at NUH, we have an excellent Neuro-inflammatory team with a national/international clinical and research reputation in Muliple sclerosis.We feel that it is now the time to conduct local (NUH), observational clinical research in our patients with NMOSD. This type of research will enhance our understanding about NMOSD and help to establish the best possible treatment approach.
We also anticipate to collaborate with the national NMOSD cetntres in Oxford and Liverpool as well as with international NMOSD centres.
The data will be fully anonymised. We will keep 2 separate databases, password protected, kept securely within a NUH NHS Trust PC. Our RedCap database will have all the demographic, clinical, paraclinical (blood and CSF) and MRI data that are already available via every day standard NHS clinical care. The other database will only have the identifiers. The link between the 2 databases will be a unique identifier, case number. Only the data handler, Dr Papathanasiou, Consultant Neurologist will have access to the identifiable database. Dr Evangelou and Dr Tanasescu will ensure that all NUH regulations are appropriately kept/met, including data storage and information governance.Dr Papathansiou, Dr Evangelou and Dr Tanasescu will be responsible for the database and will consider applications to use only the anonymised data for research purposes from other NUH NHS researchers or national and international centres. All decisions will pass through the data handler (Dr Papathanasiou). We will also monitor the database by keeping log of every time that database is accessed and document the reason. We will also conduct audits to monitor the database use and ensure appropriate access and data handling.
Research programme
NMOSD database aims to support observational clinical research locally, nationally and internationally in order to try to understand better this rare condition. We anticipate to add into the current knowledge that the whole clinical spectrum of NMOSD, including patients with MOG-antibodies is not yet fully described. We also aim to find possible clinical and paraclinical markers that are good prognostic factors. Moreover, we will focus on current treatment options and try to establish the best way to treat those patients. Comparisons between subgroups of NMOSD patients including MRI comparions will be of great secientific and clinical interest. We will also try to find clinico-radiological correlations.
Research database title
Neuromyelitis Optica Spectrum Disorders (NMOSD), including patients with myelin-oligodendrocyte glycoptorein (MOG) antibodies
Establishment organisation
Nottingham University Hospitals NHS Trust
Establishment organisation address
QMC
Derby Road
Nottingham
NG7 2UH