International Registry for Iatrogenic Cerebral Amyloid Angiopathy
Research type
Research Database
IRAS ID
323574
Contact name
Gargi Banerjee
Contact email
Research summary
International Registry for Iatrogenic Cerebral Amyloid Angiopathy
REC name
South West - Central Bristol Research Ethics Committee
REC reference
23/SW/0095
Date of REC Opinion
11 Oct 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This database will form an international registry of cases for a recently identified disease called iatrogenic cerebral amyloid angiopathy (CAA). This disease can cause bleeding in the brain (intracerebral haemorrhage) and can also be associated with cognitive changes and seizures. Iatrogenic CAA is thought to occur as a consequence of transmission
of the causative protein (amyloid-beta) between people during medical interventions.The database will only contain anonymised data. As iatrogenic CAA is a rare disease, we ask that clinicians only provide details of the reporting country (rather than institution details) in order to maintain anonymity as far as possible.
Data will be entered electronically and then stored in the UCL Data Safe Haven, which is certified to the ISO27001 information security standard and conforms to NHS Digital’s Information Governance Toolkit.
Research programme
The potential benefits of this database and subsequent research include improving our ability to accurately diagnose iatrogenic CAA; improving our ability to understand its natural history; improving our ability to provide information to patients, families and carers affected by iatrogenic CAA; updating national and international 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
International Registry for Iatrogenic Cerebral Amyloid Angiopathy
Establishment organisation
University College London (UCL)
Establishment organisation address
Gower Street
Bloomsbury
London
WC1E 6BT