(duplicate) Scottish Autoimmune Neurological Diseases (Encephalitis) register (v2)
Research type
Research Database
IRAS ID
169797
Contact name
Graham A Mackay
Contact email
Research summary
Scottish Autoimmune Neurological Diseases (Encephalitis) register
REC name
Scotland A: Adults with Incapacity only
REC reference
15/SS/0003
Date of REC Opinion
10 Jul 2015
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Our aim is to set up a national register for patients with autoimmune encephalitis in Scotland. We plan to audit practice across Scotland in comparison to the ABN’s evidence-based encephalitis guidelines (Solomon et al. Journal of Infection 2012). We can therefore ensure such patients are appropriately investigated and managed for their encephalitic illnesses. In addition we plan to obtain information regarding the clinical phenotypes, investigation patterns, treatment strategies and outcomes in such patients. A diagnostic criteria to classify cases of autoimmune encephalitis has been suggested (Zuliani, JNNP 2011). We will see whether it is possible to classify cases using these criteria within our population.
Data regarding the clinical symptoms, signs and investigation results will be submitted to the database by completion of an electronic questionnaire. A group of interest clinicians based in the Neurology centres around Scotland will complete these to ensure consistency of this data. These data will be stored within the Glasgow Safe-haven computer system, where they will be combined with data extracted digitally from the patients Scottish medical records including information about infections prior to their illness and any malignancies diagnosed at the time or in subsequent years.
Research programme
We have a group of interested clinicians from Neurology centres across Scotland. We aim for this database to be a resource to provide clinical information to aid diagnosis and management of future cases. We would hope to increase clinician awareness of these patients who have what is often a very serious, but treatable condition. By linking the database to patient SMR data, this allows for further relevant questions to be asked in the future if appropriate. This clinical data could also be linked to specimens to be held within the Glasgow Neuro-immunology bio-bank. Therefore, it may prove important in future research into these rare conditions.
Research database title
Scottish Autoimmune Neurological Diseases (Encephalitis) register
Establishment organisation
NHS Glasgow Safe-haven
Establishment organisation address
The Tennent Institute, Western Infirmary, 38 Church street
Glasgow
G11 6NT