Cerebral amyloid angiopathy-related inflammation in Northern Ireland
Research type
Research Database
IRAS ID
304415
Contact name
Mark McCarron
Contact email
Research summary
A clinical and epidemiological study of cerebral amyloid angiopathy-related inflammation in Northern Ireland
REC name
HSC REC B
REC reference
22/NI/0097
Date of REC Opinion
28 Jul 2022
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The aim of this database is to provide epidemiological and clinical data for CAA-ri in NI. Cases will be identified by the clinical neurology, stroke and radiology teams in NI. The PIs listed in the protocol will highlight the study to the relevant clinical teams in each NI health trust.
The selection criteria for inclusion of cases in the database will be participants identified as having possible, probable or definite CAA-ri according to the Boston CAAri diagnostic criteria.
The cases will initially be identified through routine clinical care by the neurology, stroke or radiology teams who will then refer to the appropriate PI for each health trust for study inclusion.
After consenting for the study data collection will be performed using the participant's Electronic Care Record (ECR). There will be no need for further appointments or data to be collected directly from participants.After inclusion data will be collected on:
Patient name, address and date of birth
Age at presentation and diagnosis
Hospital and H&C number
Contact details of Neurologist/Stroke Physician and general practitioner
Clinical history and examination at different time points.
Summary results of diagnostic investigations (e.g. MRI brain scans, brain biopsies)
Diagnostic category of disease from the Boston diagnostic criteriaResearch programme
There is concern that many patients with CAA-ri are not recognised and so not diagnosed. There is no RCT evidence base to manage CAA-ri, but observational evidence suggests that immunomodulation may decrease relapse or progression of the disease. We hope to collaborate with other research teams and invite applications for anonymised data from other research organisations. External research groups are advised to initially contact the Chief Investigator (CI) and then complete the attached data access agreement, which will be reviewed by the CI and WHSCT research governance team. To our knowledge, there are no comparable UK or international registers. The epidemiological data on CAA-ri has come from large academic centres or systematic reviews of published cases. For the clinical care of patients with CAAri in Northern Ireland, the register allows for the regional specialist team to confirm diagnosis and enhance clinical awareness of the the diagnosis of CAAri. It also facilitates clinical audit, which is an important part of good clinical governance. The case ascertainment of the register allows for more accurate epidemiological data of CAAri to enable better planning for service provision and patient needs. Importantly, it is a platform from which patients can be more easily ascertained for future research/clinical trials. The register also generates detailed clinical and epidemiological data of patients with CAAri in Northern Ireland. This is used for research by the NI CAAri and build upon our expertise in CAA.
Research database title
A clinical and epidemiological study of cerebral amyloid angiopathy-related inflammation in Northern Ireland
Establishment organisation
Altnagelvin Hospital
Establishment organisation address
Altnagelvin Area Hospital
Glenshane Road
Londonderry
BT47 6SB