Cardial Amyloidosis

Members

Michelle Michels (Erasmus MC)

Christiaan Knackstedt (MUMC+)

Peter van der Meer, Maarten van den Berg, Hans Nienhuis (UMCG)

Marish Oerlemans, Nicolaas de Jonge (UMC Utrecht)

Start date: March 2020

1. Setting up the Dutch registry of cardiac amyloidosis; This lays a foundation for new clinical studies, registry-based trials and Dutch analysis of new therapy in patients with cardiac amyloidosis.
2. Promote common national research on cardiac amyloidosis; Due to the composition and binding effect of the working group, scientific research into this rare disease is better streamlined, leaving room for new national initiatives. If they arise, joint grant applications (inter)nationally.
3. Promoting international network and research (Berlin, London, Pavia); By organizing the experts involved within the Netherlands in a national working group, it is possible to speak with one voice on behalf of the working group.

Intended activities

• Establish the Dutch registry of cardiac amyloidosis
• Joint grants for national research
• Joint Cardiac Diagnostics Guideline
• Symposium and/or special session NVVC (registry, diagnostics, research & new trials)