- Presentation of the new SOS Homepage as task-force of the “Swiss Federation of Clinical Neuro-Societies (SFCNS)”
- Implementation of a Scientific Submission Process
- Implementation of Membership and Scientific Authorship Guidelines based on ethical and scientific international standards for scientific publications
- Implementation of official communications pathways for the Swiss SOS coordinators (SC) and the Scientific Review Panel (SRP)
- All participating centers confirm Completion of Data-Entry up to year 2021 by the end of the year 2022.
- Votation and acceptance of Swiss SOS bylaws
- Election of board members (Swiss SOS organs) as Swiss SOS coordinators (SC)
- Election of board members for a Scientific Review Panel (SRP)
- Election of an official communication person for Swiss SOS
- IMK receives mandate to manage Swiss SOS
- Development of Swiss SOS bylaws
- Development of Swiss SOS bylaws
- Definition of a Steering committee (SC)
- Definition of a Scientific Review Panel (SRP)
- Definition of a Budget and Development Panel (BDP)
- Definition of a task force “Neuroradiology”
- Integration of the Kantonsspital Lucerne (LUKS) as active Member of the Swiss SOS
- Requirements are defined to grow in a well-organized fashion with long-term future perspectives
- Invitation of the Swiss Neuroradiology Centres to join the Swiss SOS
- The data collection for the years 2009 - 2014 has been completed for all eight centers in April 2016: Data on n=1952 registered patient cases are available with an excellent data completeness of 99.8% for the important variables.
- Several members of the Swiss SOS play an active role for the working group "Common Data Elements" in aneurysmal subarachnoid hemorrhage.
- A Swiss standard for neuropsychological outcome assessment after subarachnoid hemorrhage has been developed by the group.
- The hWFNS trial, as first prospective observational study that is performed in the framework of the Swiss SOS collaborative network, is successfully launched.
- The Swiss SOS study database now comprised about n=1300 registered patient cases.
- On the occasion of the 4th anniversary of the Swiss SOS collaboration, the dataset has been completed with most missing valuables having been re-assessed (Figure 1).
Figure 1: The figure depicts the evolution and further development of the Swiss SOS database between 2008 – 2016. The x-axis depicts the time, while the left y-axis depicts the number of patients registered in the database. The right y-axis depicts the number of scientific contributions (oral- or poster presentations, journal publications, or book chapters) as well as the number of Swiss SOS collaborators. Note that the initial months were unrewarding in terms of scientific output. Only after solid patient data had been collected and IRB-approval had been obtained from each centre, publications began to emerge.
- The database contains n=918 registered patient cases. While most clinical data regarding the in-hospital course and status at discharge was complete, the data on the important 12-months outcome was available in 67% of patients only.
- Establishment of a Swiss standard for neuropsychological testing after aSAH by Neurosurgeons and neuropsychologists from KSA, USB, ISB, HUG, KSSG USZ, EOC and CHUV).
- “Neuropsychological Pilot study” at both KSA and KSSG using a preliminary test-battery examining all relevant cognitive domains, preferably using tests available in German, French, Italian, English with normative data available for the Swiss cultural area), was initiated.
- A bilaterally desired future collaborations with large international databases such as the Subarachnoid Hemorrhage International Trialists data repository (SAHIT) is initiated.
- The study was registered by the coordinating IRB of the University of Geneva ethics committee under the number “11-233R (NAC 11-085R)”
- The local IRBs of every participating centre approved the study protocol.
- Two years after the initial meeting, the database contains n=780 registered patient cases (2009 – 2011 data of all seven participating centres).
- Improvement of the data safety: Initiation of Secu-Trial® eCRF with the initial costs and yearly expenses evenly distributed between all centres until research funds would have been received to cover the expenses.
- Allocation of major topics in aSAH research to the centres that evinced special interest, such as treatment outcomes (ISB), socioeconomic aspects (USZ), radiological and neuroanatomical aspects (USB), cerebral vasospasm, delayed ischemic neurological deficit and delayed cerebral ischemia (KSA).
- Refinement of the clinical outcomes (standardized outcomes including established neurological grading scales, but also the neuropsychological and psychosocial aspects of outcome).
- Positive appraisal from the IRB for four out of seven participating centres
- Data on patients treated in 2009 including the one-year follow-up as well as some preliminary 2010 data available
- Definition of cerebral vasospasm, delayed ischemic neurological deficit and delayed cerebral ischemia – clinically relevant frequent complications and scientifically highly interesting parameters in aSAH-research
- Further relevant parameters are added to the database (e.g. time to treatment, treatment complications, days on the intensive care unit, etc.).
- Official founding of the Swiss SOS on November 23rd 2010
- Agreement on a basic, merge and critical analysis of the Swiss 2008 data, as well as identification and extinguishment of difficulties encountered during the process of retrospective data collection.
- The database contains n=278 registered patient cases from six centres, and the prevalence of aSAH per center, the treatment modalities as well as outcomes (morbidity, mortality) were available.
- 1) The standardized definition of each database parameter (field definitions), 2) type and safety of data management, 3) approval of the IRB from each centre, and 4) handling of data analyses, project propositions, and positional assignments were defined.
- The idea of a joint database to collect data on patients with aneurysmal subarachnoid haemorrhage (aSAH) in whole Switzerland was born.
- The heads of the departments of KSA, USB, ISB, HUG, CHUV, KSSG and USZ were contacted and asked for collaboration (at that time, no neurovascular service was available at EOC).
- Representative neurovascular neurosurgeons per centre agreed to retrospectively collect basic parameters (age, gender, haemorrhage severity scores, type of therapy, outcome at discharge) of aSAH patients that had been treated at their centre in the year 2008 as a “pilot concept”.