National Amyloidosis Register (NAR)

A national amyloidosis register is being developed in collaboration with other University Medical Centers in the Netherlands. The register covers all types of systemic and local forms of amyloidosis. The aim of this national register is to map the occurrence and the course of the disease and the effect of treatment of the different types of amyloidosis. In addition, the register can be used to quickly identify patients who could participate in clinical studies. Our proposal is that data can be entered in the first instance by the Expertise Center and affiliated treatment centers, and that in the long term, in collaboration with the Amyloidosis Foundation, patient data and especially PROMs (patient registered outcome measurements) can also be entered.