ICOS: International CIDP Outcome Study
Date published: April 12, 2024
International CIDP Outcome Study (ICOS)
In this study, we investigate the variation and predictors of the disease course in chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).
Background
CIDP is a rare condition caused by inflammation of the nerves. This causes complaints of loss of strength and sensory disturbances in the arms and legs. These complaints usually develop gradually over a period of several months. CIDP is treated with medications that combat inflammation, such as immunoglobulins or corticosteroids. However, there are major differences in the type and severity of CIDP, which can make the diagnosis difficult.
The effect of the treatment and the course of the disease also differ from patient to patient. It is currently not known what determines these differences between patients. In addition, patients often require long-term treatment and there is currently no reliable way to measure disease activity in the blood, making it difficult to monitor the disease and determine when a patient can stop treatment. Overall, there are still many questions about the variation, diagnosis and treatment of CIDP. The ICOS study was set up to answer these questions.
Aim
The aim of the ICOS is to better map the variation, diagnosis, treatment, and the effect of treatment of patients with CIDP. We hope to use this to improve diagnostics in the future and to be able to treat and inform patients in a more targeted manner.
Status
The ICOS study was initiated by the Erasmus MC and is being conducted in collaboration with Amsterdam UMC and Utrecht UMC.
Schedule
As of April 2024, 318 patients are included in the study. We intend to continue inclusion until mid-2026.
Participation
Participation is possible for patients with CIDP who are treated or being followed in one of the three participating centres: Erasmus MC, Amsterdam UMC (AMC location) and UMC Utrecht.
A list of research articles
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The role of B lymphocytes in the progression of chronic immune-mediated neuropathies
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Study on CIDP
In addition, I am studying the role of B lymphocytes in the progression of chronic immune-mediated neuropathies, including Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Autoimmune Nodopathy (AN). Through this research, we strive to enhance diagnostics, clinical care, and treatment options for patients affected by these conditions.
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Detecting anti-paranodal antibodies
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Study on GBS
My research primarily focuses on investigating novel pathogenic antibodies in paranodal regions associated with immune-mediated neuropathies. The aim of my project is to improve diagnostic methods for detecting anti-paranodal antibodies and to determine the prevalence of these harmful autoantibodies in patients with Guillain-Barré Syndrome (GBS).
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Time to treatment study
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Study on GBS
In this project, we aim to describe the current practice of time to treatment. We also assess the association with functional outcome in patients with GBS who received first-line treatment with intravenous immunoglobulin or plasma exchange. This study is performed using data from the International GBS Outcome Study (IGOS).
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