Contact and FAQ
Contact
To contact us, please send an e-mail to gbsstudies@erasmusmc.nl
We will answer as soon as possible.
Frequently asked questions (FAQ’s) about GBS and IGOS for patients
1. What is the Guillain-Barré syndrome (GBS)?
GBS is a disorder affecting the peripheral nerves. Damage of the peripheral nerves in GBS results in rapidly progressive weakness of the legs and arms. In addition some patients may experience abnormal sensations like tingling or numbness, facial weakness, double vision, or problems with swallowing. GBS may also affect the nerves of the muscles involved in breathing, and these patients need to be ventilated artificially at an Intensive Care unit (ICU). After treatment, most patients recover, but the recovery may be delayed, slow and incomplete.
2. What is the cause of GBS?
GBS is a result of an unintended reaction of the immune system to the nerves. This immune response is usually triggered by common bacterial or viral infections. These infections are mild and uncomplicated in most persons, but in very rare cases it causes a harmful immune response to the nerves leading to GBS. It is unknown why these persons response in this way.
3. What are the symptoms of GBS?
The symptoms of GBS usually occur quite suddenly, most frequently starting with weakness in the legs. Many patients also experience pain in the back or in the legs. Sensory disturbances such as numbness or tingling are also frequently reported. Approximately 25% of the patients will need temporal mechanical ventilation and tube feeding. Most patients will reach a nadir of symptoms within four weeks after onset of symptoms. After this period, there will start a phase of recovery, lasting weeks to several months or even years. The rate and degree of recovery is difficult to predict for individual patients but overall, 80% of the patients will be able to walk unaided after 6 months.
4. How is the diagnose GBS confirmed?
The diagnosis is based on the clinical symptoms, which are told by the patients and can be defined further by neurological examination. The diagnosis can be confirmed by nerve conduction studies. In some cases, other causes need to be excluded by lumbar puncture or other additional investigations.
5. How is GBS treated?
All patients in the acute phase will be admitted to the hospital for diagnosis and monitoring. Some patients may even be admitted to the intensive care unit (ICU) for assistance by mechanical ventilation. Severely affected patients who are unable to walk or breath or have other severe manifestations require specific treatment with either immunoglobulins (human antibodies) via an infusion, or plasmapheresis (a blood cleansing procedure).
6. What is the Miller Fisher syndrome?
The Miller Fisher syndrome is a rare variant of GBS which usually affects the eye muscles first resulting in double vision. In addition, patients may develop ataxia (problems with balance and coordination) and loss of tendon reflexes. These patients may also develop weakness of the legs and arms and in that case have a Miller Fisher –GBS overlap syndrome.
7. What is the International GBS Outcome Study (IGOS)?
The International GBS Outcome Study or IGOS is a worldwide research project and the largest study conducted on GBS thus far. The IGOS is coordinated by the Erasmus MC, University Medical Center, Rotterdam, The Netherlands. In IGOS are investigated many important research questions about the cause and treatment of GBS (see item about the aim of IGOS).
8. What is the aim of IGOS?
The aim of IGOS is to improve our understanding of the cause, progression and recovery of GBS. In the study we aim to identify the factors that determine the disease onset, clinical course and outcome. None of the patients are the same and knowing these factors will provide a basis for predicting the prognosis for individual patients. This will enable us to test new treatments for specific patients groups. The final aim is to personalize treatment and improve the outcome for patients with GBS.
9. Which patients can participate in IGOS?
All patients with the diagnosis GBS can participate, including variants of GBS such as the Miller Fisher syndrome, provided they can be registered in IGOS within 2 weeks of onset of weakness, and are able to be followed in the study for at least 1 year. Children and untreated patients can also participate.
10. How can I join IGOS?
If you are diagnosed with GBS, or any variant of GBS, you can discuss with your treating neurologist if you can join the IGOS. In order to join IGOS, it is required for your hospital to have approval from its ethical review board to participate in IGOS.
11. Will joining IGOS affect my normal medical care?
No, there will be no interference with your routine medical care.
12. If I join IGOS what procedures will be followed?
First, you will need to sign an informed consent form, which is required to participate in IGOS. During the first year of the study, there will be 8 visits; at entry and at 1 week, 2 weeks, 4 weeks, 8 weeks, 13 weeks, 26 weeks and 52 weeks. During these visits data will be collected by questionnaires about pain and fatigue and by neurological examination. Blood samples will be obtained, this will be combined with routine care as much as possible. After this year, there is the possibility to participate in the extended study protocol, in which you will have a telephone visit after two and three years.
13. What are the possible risks?
The risk of participating in IGOS is minimal, for it is an observational study only. However, drawing blood samples (as also done during routine clinical care) always poses a small risk of pain, small hemorrhage or infection at the needle injection site.
14. Who has access to my information if I join IGOS?
Any personal information we collect about you will be confidential and will be handled with care. This information will only be available to the local research staff, the coordinating centre of your country, and the coordinating center of IGOS, Erasmus Medical Center in Rotterdam, The Netherlands. The data will be used for research purposes only and not shared with others.
15. Will I be paid for joining IGOS?
No, there is no financial compensation for this study.
16. What if I move to another place?
Please inform your doctor about your new address or telephone number so this information can be updated in the registry.
17. What are the benefits for me if I join IGOS?
There are no personal benefits for you for participating in this study. By taking part in IGOS, you will help to increase our understanding of GBS and this knowledge will help future GBS patients.
18. What if I want to withdraw from IGOS?
Participation in IGOS is voluntary. You may withdraw at any time, even without reason. Your decision to withdraw will have no effect on your current or future medical care. Please contact your doctor if you want to withdraw from IGOS.
19. Where can I find more information?
For more information about GBS, see the website of the patient organization GBS-CIDP Foundation International http://www.gbs-cidp.org/.
For more information about the IGOS please contact the IGOS secretary gbsstudies@erasmusmc.nl.
