"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

IGOS meeting January 2016

Zika

There is a lot of turmoil about the possible association between infections with the Zika virus and GBS in Central and South-America. In some countries in that region a raise in GBS cases has been reported since the Zika virus outbreak. At present there are more questions than answers and IGOS tries to help the centers in the endemic areas with their research. Urgent questions that need to be addressed are (1) Do the reported cases have GBS or a mimic of GBS?, (2) Is there an association between recent Zika virus infections and GBS, which can be defined in a proper case-control study, (3) If there is an association, what is the typical clinical phenotype and course of GBS after Zika infection? (4) What is the pathogenesis?, and last ut not least (5) What is treatment and care is provided to these patients? For more updates on Zika and GBS see:

http://www.who.int/en/

http://www.cdc.gov/

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About IGOS

The International Guillain-Barré syndrome Outcome Study (IGOS) is a worldwide prospective study, conducted by the Inflammatory Neuropathy Consortium (INC), that aims to define biomarkers for disease activity and recovery and to develop prognostic models to predict the clinical course and outcome in individual patients with Guillain-Barré syndrome (GBS).

GBS is an acute polyradiculoneuropathy with a highly variable clinical course and outcome. Standard treatments are not sufficiently effective in a substantial proportion of patients with GBS. Clinical predictors and biomarkers need to be identified to predict the clinical course in individual patients and develop more effective treatments.

Final goals of IGOS are:
  • to be able to inform patients and relatives better about the prognosis of GBS
  • to understand the mechanism of disease progression and recovery
  • to conduct selective therapeutic trial to improve outcome in patients with poor prognosis

IGOS will include at least 1000 patients and has a follow-up period of at least one year. All patients with GBS, or variants of GBS (including the Miller Fisher syndrome), within 2 weeks of onset of weakness can be included, irrespective of the patients sex, age, severity and treatment. Data regarding the clinical situation and treatment will be obtained at entry, and after 1 week, 2 weeks, 4 weeks, 8 weeks, 3 months, 6 months and 1 year. Data will be obtained by using one to two page questionnares and a web based data entry system. The study will be conducted according to the criteria of Good Clinical Practice (GCP), certifying the anonymous and highly secured storage of data. Information obtained in the first two weeks will be used to predict outcome at later time points. In addition, electrophysiology, serum and DNA can be collected, although this is not required to participate in the study.

To participate in IGOS requires:
  • (free) membership of the INC or collaboration in a network coordinated by an INC member
  • agree with the ethical criteria of IGOS
  • see more than 5 GBS patients in the last 2 years
  • a computer and access to internet
  • understanding of the English language
Certified participants can include patients in IGOS. To become a certified participant you have to contact the local coordinator. We aim to include all GBS patients with GBS and variants of GBS, irrespective of age, severity of disease and treatment.
Inclusion criteria are:  
  • fulfilling the diagnostic criteria for GBS of the National Institute of Neurological Disorders and Stroke (NINDS). In addition all patients with Miller Fisher syndrome (MFS) and other variants of GBS can be included
  • weakness started less than 2 weeks ago
  • no restrictions to conduct a follow-up of at least 1 year
  • written informed consent
Inclusion of patient data can be done via this website (you can get more information about this from your local coordinator)