iCAA occurs following medical procedures as a consequence of transmission of the amyloid-β protein. The causative procedures to date have mostly used cadaveric human material; this includes cadaveric dura mater (including “Lyodura”) for dural patches and for embolization, and treatment with cadaveric human growth hormone.  The full range of causative procedures are not known; others, such as neurosurgery without cadaveric material and blood transfusion have also been implicated.

The registry will gather essential data on the incidence, clinical presentation, natural progression, and potential causative factors associated with iCAA. It will provide regular (annual or biennial) reports on the number of cases identified worldwide, and a rolling report on clinical follow-up events. The Registry will also act as a platform to facilitate future sub-studies, for example those relating to fluid-based or neuroimaging biomarkers.

The registry has received full ethical approval. It asks for completely anonymized data, which can be entered via a secure online portal. Follow-up data will be requested annually.

If you have clinical experience working with iCAA patients, please participate! This collaboration will significantly contribute to advancing knowledge and promoting effective strategies for managing and preventing iCAA.

For more information, please get in touch with g.banerjee@ucl.ac.uk or k.kaushik@lumc.nl