Wednesday, 24 June 2015
Dear IGOS collaborators,
With great pleasure we would like to let you know that the patient number 1000 has just been included in IGOS by Prof. Eduardo Nobile-Orazio! We have reached what we have been aiming for since June 2012. This is a major achievement for which we would like to thank you all, and this time Prof. Eduardo Nobile-Orazio in particular.
By no means this means the end of the study. It is still possible to include new patients in IGOS until December 31 of 2015, and of course all included patients will have a follow-up for at least 1 year.
We hope that many of you will attend the PNS congress in Quebec so we can celebrate this together!
IGOS secretary and coordinating center
Bianca, Christine, Joyce, Marieke and Bart
About IGOSThe 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
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