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

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

New IGOS website

2012
In 2012 an international team of expert neurologists and scientists decided to join forces and start the International GBS Outcome Study (IGOS), aiming to collect the world’s largest high-quality data/biobank for further research.



2016
By 2016 – 100 years since the description of Guillain Barré Syndrome – the international team had expanded considerably. Nowadays the IGOS Consortium consists of researchers and clinicians from 143 centres in 21 countries across 5 continents.



2024

Together we included 2000 patients with the Guillain-Barré Syndrome (GBS) from 21 countries across 5 continents. All patients diagnosed with GBS are included, independent of age, severity, variant, treatment, and disease course.

IGOS is the largest real-world database on GBS worldwide containing clinical data, biomaterial, electrophysiology and questionnaires on patient-reported outcome measures. Data are collected at standardized timepoints for up to three years after hospital admission. Follow-up was finalized in May 2024.


New website
We will eventually shut down the original website for IGOS which was designed for the inclusion of patients and the collection of clinical data. 

A new website for IGOS has been developed to share information on projects and for applications. The new website consists of  two parts; a public part and a part especially for members. This part is accessible by a secured login. There will be no patient data on this new website. One can send a request for data, which will be shared via the DRE.

For more information please visit: www.igosresearch.com



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2000 inclusions!

Patient 2000 was inclused on May5th by Dr. Gerardo Gutierrez Gutierrez!

What are the implications of reaching this IGOS-2000 milestone?

  1. From now on it will not be possible to include new patients in IGOS; the website is now closed for new inclusions.
  2. It is important to continue the collection of follow-up data and samples from previously included patients. This collection will continue until the last (3 year) follow-up visit of the last included patients (so May 2024). During that window the website will be open for collecting these follow-up data.
  3. We are about to start a new round of data quality assessments for the first 2000 patients included in IGOS. You will all be approached for this in the coming months.
  4. We will also plan new transports of materials to Erasmus MC.
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More news

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.