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

Goals

1. To unite research on cardiac amyloidosis on a national level. This enables the working group to initiated national projects and oversee all Dutch patients treated with cardiac amyloidosis in the four centers.
2. Connect internationally with amyloidosis colleagues to collaborate on international research projects. Being united on a national level makes it easier to represent the Netherlands internationally.
3. To start a national (Dutch) amyloidosis registry. This registry will be the foundation for future clinical trials, registry-based trials and Dutch subanalyses of developing therapy in RCTs. The registry will also allow for a rapid identification of patients eligible for novel & upcoming trials.
   United together as cardiac amyloidosis experts, the working group functions as a serious partner in advising Dutch cardiologist, the national patient organization, ZiN/VWS and pharmaceutical companies in the rapidly changing landscape of treatment options.

Meetings
National Amyloidosis Symposium 2020
National Amyloidosis Symposium 2021
National Amyloidosis Symposium 2022

Achieved goals

• 4 Joint manuscripts, 2 in preparation, 2 submitted
• Participation in international RCTs: TTR stabilizers, siRNA & ASO therapy, depletion studies
• 2x NLHI cooperational research call on behalf of the working group (not granted)
• Document ‘Gepast gebruik arrangement amyloïd cardiomyopathie’ ZiN/VWS
• Expertise network website for physicians and patients: https://amyloidose-expertise.net/

Plans next 3 years

Goals:

1. Increase (inter)national research activities
2. Establish a national amyloidosis registry (currently looking for funding)
3. Organization of the yearly amyloidosis symposium

Planned activities:

1. 2024 National Amyloidosis Symposium
2. Find additional funding for the national registry
3. Finalize joint manuscript and brainstorm session novel projects.