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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SID-GBS Trial
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Study on GBS
Second Intravenous Immunoglobulin Dose in Patients with Guillain-Barré Syndrome and a Poor Prognosis | Nationwide study on the treatment of Guillain-Barré Syndrome (GBS) Background Guillain-Barré Syndrome (GBS) is a rare inflammatory disorder of the peripheral nerves that can lead to acute paralysis of the arms, legs, and/or respiratory muscles. GBS can be treated with therapies […]
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IGOS: International GBS Outcome study
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Study on GBS
Worldwide research into the cause, diagnosis, treatment and prognosis of GBS. Background: An international group of neurologists and scientists launched the International GBS Outcome Study in 2012. By joining forces across countries and continents, the consortium set out to establish the world’s largest high-quality prospective GBS cohort and biobank to facilitate research into the causes, […]
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The Rotterdam Study
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Study on CIAP
Background Chronic axonal polyneuropathy is the most common disorder of the peripheral nervous system. It is a slowly progressive disease and affects 4-13% of people aged 50 years and older. The disease impairs the function of the nerves resulting in symptoms as tingling, numbness, burning sensations, pain and muscle weakness. Unfortunately, there is no treatment. […]
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