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IGOS meeting Glasgow - 22 June 2016 Aug/01/2016
During the INC conference in Glasgow on 22 June 2016, a meeting was organized for the IGOS steering committee and country coordinators. IGOS makes good progress with 1305 patients with GBS included and an extensive data quality check on the first 1000 included patients that is almost finalized. First results were shown on the demography, clinical features, treatment and outcome of GBS on the 5 continents. Comparative analysis were shown illustrating the major difference between patients from different geographical areas. In addition, a special section was organized on the preparation of studies on the association between Zika virus infections and GBS that will be conducted in collaboration with the IGOS consortium. There are various actions planned for the next months:
- The data quality checks on the first 1000 patients will be finalized before October 2016. All centers will be approached with specific questions again and the last opportunity to update the data will be in September 2016. Thereafter we will have a data freeze on the first 1000 and this databank will be used to start the first specific research projects based on the project applications submitted in the beginning of 2016. Several specific projects were discussed extensively at the conference.
- The development of a central IGOS biobank is ongoing in which all samples collected in IGOS will be transported to Rotterdam. Our aim is to have this biobank in place and fully operational before the end of 2016. This biobank will then be distributed used to start the first studies.
- We will continue collecting data and biosamples according to the same IGOS protocol until we have reached 1500 inclusions. We aim to reach this number before the next PNS meeting in June 2017. So we would like to encourage all centers to continue including patients to have a validation cohort of 500 additional patients.
- The general view was to continue IGOS after June 2017 but to first evaluate and improve the protocol. One of the aims is to develop a platform for conducting therapeutic trials in the IGOS consortium and several industries with very promising new therapies have already indicated to be willing to collaborate with us. Funding to be able to conduct such therapeutic studies is sought.
- After June 2017, when the new protocol for IGOS has been installed, it will be possible for other centers to participate in the IGOS consortium. Many new centers, also from countries not previously participating in IGOS, have indicated to be willing to participate.