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I run a research line on idiopathic inflammatory disorders/myositis, which is embedded in Amsterdam Neuroscience. Together with a great team I aim to improve the lives of patients with myositis by a translational approach.

Diagnosis

We investigate the diagnostic value of ancillary investigations through a prospective diagnostic study (ADAPT study, Anneke van der Kooi), for which we receive referrals from large parts of the Netherlands (2019-2023).

Treatment

Following a pilot study on monotherapy IVIg in IIM, I took up a phase-2 placebo controlled RCT on the effect of add-on IVIg in the earliest phase of IIM (2021-2025).

Fundamental research

Based on careful clinicopathological observations and building upon pioneering work of emeritus Professor Marianne de Visser, we aim to further improve the current disease classification and to advance our understanding of the divergent disease mechanisms within the spectrum of IIMs (2022-2026).

For this, we rely on an established biobank (Professor Eleonora Aronica, neuropathologist) with >200 samples of clinically well characterized IIM patients, including disease controls.

A collaboration with the independent lab of Professor Coen Ottenheim (muscle physiology) provides a valuable opportunity to investigate the interplay between derangements of the immune system and contractile dysfunction of myofibers isolated from patient biopsies and of cultured, adult murine myofibers. The objective of this project is to construct an ex- vivo disease model for myositis, which enables testing of new compounds (2022-2026).

Previous research activities

Before my research focus shifted to inflammatory myopathies, I worked on brain involvement in myotonic dystrophy (Nijmegen) and ALS (Amsterdam) which led to a disease specific questionnaire (www.alsftdq.nl), and advancements in the understanding of cognitive profiles, brain networks, and effects of cognitive and behavioral therapy. The research line on ALS and cognition will be continued by Professor Yolande Pijnenburg (Amsterdam University Medical Centre).

My work is supported (1.747k) by Prinses Beatrix Spierfonds, ALS stichting, Marigold foundation, argenx, Top Sector Life Sciences & Health and NWO.