"A world-wide prospective study of INC on prognosis and biomarkers in GBS"

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Participants

IGOS will be conducted by members of the INC and PNS. The board of the INC supports the IGOS (http://www.pnsociety.com/INC.htm). The IGOS Group will own, share and use the IGOS data- and biobank for research purposes only. The IGOS Group consist of the Steering Committee, Coordination Centre, Country and Region Coordinators, local networks of Particpants and Expertise Groups. To increase the efficiency we will support the participants to organise local networks in regions or countries.  

Steering Committee
The IGOS Steering Committee will supervise the development of the study protocol, monitor the conduct of the study and support the recruitment of participants, and consists of:

• Dr. Bart C. Jacobs (chair), Erasmus MC, Rotterdam, The Netherlands
• Prof. Richard A.C. Hughes, Institute of Neurology, University College London, UK
• Prof. David R. Cornblath, Johns Hopkins University, Baltimore, USA
• Prof. Pieter A. van Doorn, Erasmus MC, Rotterdam, The Netherlands
• Prof. Ken C. Gorson, Tufts University School of Medicine, Boston, USA
• Prof. Hans-Peter Hartung, University of Düsseldorf, Düsseldorf, Germany
• Prof. Hugh J. Willison, University of Glasgow, Glasgow, UK
• Prof. Susumu Kusunoki, Kinki University School of Medicine, Osaka, Japan

Coordination centre
The Coordination Centre of the IGOS will be located at the Erasmus MC in Rotterdam and will arrange the coordination, logistics and IT of the study. More specifically this centre will coordinate:

• Design and control of the web based data support
• Support of participants of IGOS
• Storage and quality control of data

Expertise Groups
The Expertise Groups of the IGOS will be formed by the participants of the IGOS and focus on specific research areas, depending on the interest of the participants and already includes topics such as:

• Prognostic modelling : development of models to predict clinical course and outcome
• Treatment interventions : defining treatment practice, effects and side-effects
• Pharmacokinetics of IVIg : defining serum IgG levels after IVIg in relation to outcome
• Electrophysiology  : prognostic relevance of electrophysiological classification  
• Preceding events  : defining type of infections/vaccinations related to GBS and outcome
• Anti-neural antibodies : characterisation of serum antibodies related to GBS and outcome
• CSF biomarkers  : proteomic studies of CSF in relation to GBS and outcome
• Genetic markers  : study genetic polymorphisms related to GBS and outcome
• Paediatric GBS  : characterisation of clinical course and outcome in children with GBS
• Long-term outcome : residual disability and impact 2 and 3 years after disease onset 
• Outcome measures  : development of clinical outcome measures to monitor GBS
Additional Expertise Groups can be formed, depending on the interest of the IGOS Participants.

IGOS Participants  
IGOS participants are neurologists that will actually see and include patients with GBS and if interested participate in one of the Expertise Groups. To participate in IGOS it is required to:

• Be a member of the INC or to collaborate in a network coordinated by a member of the INC.
• Subscribe to the ethical guidelines for participating in the IGOS
• Acquire ethical approval by their local institute to participate in the IGOS
• Have seen at least 5 GBS patients in the last 2 years
• Be able to conduct a follow-up of one year
• Understand English
• Have access to the internet  

How to become a participant in IGOS?
If you are interested to participate, first become a member of the INC by sending an e-mail to the secretary of the INC, Michael Lunn (michael.lunn@uclh.nhs.uk) or sent an e-mail to your local coordinator. There are no costs or conditions for membership of the INC. All INC members will receive an invitation to participate before September 2011, and regular updates thereafter. Participation in IGOS also requires local ethical approval and translation of patient information sheets.
 
Time line IGOS

• Draft versions of IGOS presented at PNS/INC meetings in Würzburg (2009) and Australia (2010).  
• GBS-CIDP Foundation International funded the development of a web based data support (2010).
• Formation IGOS Steering Committee and first versions IGOS research protocol/website (2011).
• GBS-CIDP Foundation International funded the implication of the IGOS (2011-2012).
• Presentation of IGOS research protocol and website to members of the INC in August 2011.
• Recruitment of participants for IGOS and IRB approvals from August 2011.
• Test round with participants to evaluate website in practice in April 2012.
• Official translation of patient information forms and informed consent forms in various languages by the coordination centre in April/May 2012.
• Final version of the web based data system in April 2012.
• Inclusion of first patients in IGOS in May 2012.
• Aim to include last patient before May 2015 and end follow-up before May 2018.