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research-project
Research project

International CIDP Outcome Study (ICOS)

Prospective observational cohort study on clinical and biological predictors of disease course and outcome in chronic inflammatory demyelating polyneuropathy.

What we do

About our project

Rationale: Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is an immune-mediated neuropathy causing muscles weakness and sensory deficits of arms and legs. CIDP is a heterogeneous disorder, as indicated by the variety in clinical and electrophysiological phenotypes, response to treatment and long-term outcome. At present, there are no standardized data collected from a substantial number of patients with CIDP to document this heterogeneity or to investigate the clinical and biological determinants of this heterogeneity.

 

Objectives: The objective of the International CIDP Outcome Study (ICOS) is to describe in detail the variation in clinical and electrophysiological subtypes, current practice of treatment, clinical course and outcome of CIDP. The second objective is to define the clinical and biological determinants and predictors of this variation in subtypes, disease activity, treatment response and outcome.

 

Study design: ICOS is a multicenter, prospective, observational cohort study. Both newly and previously diagnosed patients, fulfilling the EFNS/PNS criteria for the diagnosis CIDP, independent of age, disease severity or treatment can be included. Detailed data will be collected on the (1) demography, (2) presenting symptoms, (3) diagnosis,  (4) treatments and clinical response to those treatments, and (5) long-term outcome. In addition, biomaterials, including DNA, cerebrospinal fluid and serial follow-up serum samples Data will be acquired via a web based data entry system and biosamples will be stored until use.

 

Expected results and planning: The ICOS will result in a unique collection of prospectively collected, highly standardized clinical data, and a biobank from a large population of well-defined patients with CIDP. This data-/biobank will be used to optimize the diagnostic criteria for CIDP (subtypes), to identify biomarkers to monitor and predict disease activity and response to treatment, and to predict models for treatment response and outcome in individual patients. The ICOS will provide an infrastructure that enables international collaboration in the conduct of therapeutic and other studies in CIDP. The ICOS in part will also support national ongoing studies.

Our research focus

Objectives

The general objective of the ICOS is to describe the variation in clinical and electrophysiological characteristics of CIDP and to identify the clinical, electrophysiological and biological predictors of disease activity, treatment response and outcome in patients with CIDP.

 

More specifically, the ICOS has the following objectives:

1. Standardize the documentation of clinical characteristics, nerve conduction study protocols and disease course and to start collecting a data-/biobank of well-defined patients with CIDP.

2. Describe the variation in clinical and electrophysiological characteristics of CIDP to improve the current diagnostic criteria for CIDP and its subtypes.

3. Describe the current practice of treatment of CIDP.

4. Describe the short-term and long-term efficacy of treatment of CIDP in relation to the clinical and electrophysiological subtypes of CIDP.

5. Identify biomarkers that can be used to define the clinical and electrophysiological subtypes of CIDP and to monitor disease activity and predict therapeutic efficacy.

6. Develop prognostic models to predict the clinical course and outcome in individual patients with CIDP as a first step to personalize medicine.

7. Provide an infrastructure to collaborate in the conduct of new therapeutic and other patient related studies in CIDP.

Funds & Grants

The ICOS study is funded by CSL-Behring, GBS-CIDP Foundation International and Grifols.

Collaborations

Dr. Filip Eftimov, neurologist

Department of Neurology

Amsterdam University Medical Center, location AMC, Amsterdam

 

Prof. dr. Ludo van der Pol, neurologist

Department of Neurology

University Medical Center Utrecht, Utrecht

Publications

Carina Bunschoten, Filip Eftimov, W. Ludo van der Pol, Bart C. Jacobs, for the ICOS consortium. International chronic inflammatory demyelinating polyneuropathy outcome study (ICOS): Protocol of a prospective observational cohort study on clinical and biological predictors of disease course and outcome. Journal of the Peripheral Nervous System, DOI: 10.1111/jns.12296.

Our team

Principal investigator

Prof. dr. Bart Jacobs

 

Co-investigator

Prof. dr. Pieter van Doorn

 

PhD-students

drs. Carina Bunschoten

drs. Merel Broers

 

Biobank

Ruth Huizinga

Wouter van Rijs

Anne Tio-Gillen

 

Research-coordinator

Marieke van Woerkom

 

Corresponding address

cidp.studies@erasmusmc.nl