Background

IGOS (International GBS Outcome Study) is an international observational study aiming to identify clinical and biological determinants and predictors of disease course in Guillain-Barré syndrome. The study is conducted by the Inflammatory Neuropathy Consortium (INC). Currently there are 144 centers from 18 different countries participating in IGOS. We expect that more than 1000 GBS patients will be included at the end of 2015, making IGOS the largest prospective study in GBS ever performed.

Patients

Patients of all ages with GBS or a variant of GBS can be included in IGOS. Patients can decide to participate in optional modules in IGOS. One of the optional modules is an extended follow-up were the patient will receive a telephone assessment at 2 and 3 years after the diagnosis. 

Method

According to a strict protocol all new GBS patients can be included en will receive a detailed follow-up for at least one year. Blood samples wil be obtained at all visits when the patients have a full examination, which is at entry, week 1, week 2, week 4, week 26, week 52. Additional full examinations will be performed at 8 weeks and 13 week. If the patient is no longer admitted at this time these two visits can be done by telephone.

In most patients a spinal tab will be performed, if its possible an additional volume of 2ml of CSF can be obtained for biomarker studies. If the patient will not have a diagnostic puncture, or if the puncture was performed before inclusion in the IGOS, no additional spinal tap will be performed. 

In children the blood samples are not mandatory, so if the parents do not give consent for the blood samples, the child can still participate in IGOS. Same goes for the spinal tap.

For more information on IGOS, press here.

To include a patient in IGOS, press here 

Background

When the first children were included in IGOS, we noticed that not all questions could be answered, especially for young children. Also not all questionnaire were suitable for children, this way important information was lost. To be able to focus more on children with GBS within IGOS, IGOS-kids was founded. IGOS-kids has the same structure as IGOS, only age specific questionnaires and painscales were added. Currently 7 countries are participating in IGOS-kids. 

Methode

The program Open clinica was used to develop a database were patients can be included online. You need a username and password to include a patient. 

Pain assessment scales

In IGOS-kids we specially focus on pain in children with GBS. We use age specific painscales, for example: the Faces pain scale revised for children between 5-12 years old.

Quality of life questionnaires

In IGOS-kids we also use age related quality of life questionnaires. For example the PedsQL questionnaire is used, containing questions regarding fatigue and quality of life. Below you can find a responsemodel for children between 5-7 years old from the PedsQL questionnaire.

Questions?

For more information or questions regarding IGOS kids please contact us:

E-mail: j.roodbol@erasmusmc.nl or gbsstudies@erasmusmc.nl

Telephone: 0031107043824 

To include a patient in IGOS-kids, press here.