UK Registry for Iatrogenic CAA
Research type
Research Database
IRAS ID
369770
Contact name
Gargi Banerjee
Contact email
Research summary
Database of UK patients with iatrogenic cerebral amyloid angiopathy (iCAA)
REC name
South West - Central Bristol Research Ethics Committee
REC reference
26/SW/0038
Date of REC Opinion
21 Apr 2026
REC opinion
Further Information Favourable Opinion
Data collection arrangements
We wish to create a database in order to conduct research investigating a disease called iatrogenic cerebral amyloid angiopathy (iCAA). We plan to approach people who have a diagnosis of iCAA and ask for their consent for their data to be used for future research purposes.We plan to identify people who have iCAA by conducting UK-wide surveys of doctors who looking after patients with iCAA, via the Association of British Neurologists (ABN), and the British and Irish Association of Stroke Physicians (BIASP).
We will initially contact people via their specialist doctor (the survey respondent). We will provide the specialist doctor with a written consent form, information sheet and privacy notice (see attachments), and ask them to give these to any potential data subjects. The participant will be asked to return the competed consent form by email or by post (postage paid).
We will ask participants if they are happy for us to hold identifiable data , so that we may contact them with regard to future studies. If a data subject does not provide consent for this, they will be removed from the database.
We also plan to use this database to create a patient engagement group. De-identified data from this group's activities (for example, from surveys or discussions) will also be stored.
Research programme
The proposed database will be used to contact data subjects in order to invite them to participate in future research studies on iCAA. It will be used by Dr Gargi Banerjee and other clinical colleagues at the National Prion Clinic and the UCL Stroke Research Centre. This database is the first national registry of people with iCAA; given that iCAA is a rare and emerging disease, this centralised registry will be a unique resource for future research. The potential benefits of this database and subsequent research include improving our ability to accurate diagnose iCAA; improving our ability to understand its natural history and the impact of potential interventions that might reduce future disease (e.g. stroke, dementia) risk ; to update public health bodies about the number of people affected by this condition, and potential risk factors, and whether it is necessary to institute new public health measures (for example, relating to instrument sterilisation) in order to prevent future cases of this disease.
Research database title
Database of UK patients with iatrogenic cerebral amyloid angiopathy (iCAA)
Establishment organisation
University College London (UCL)
Establishment organisation address
Gower Street
Bloomsbury
London
WC1E 6BT