SITS EAST Meeting, December 14-15 2017, Stockholm Sweden Presence and purpose Representatives from sixteen SITS East countries: Bulgaria, Croatia, Czech Republic, Estonia, Hungary, Kyrgyzstan, Lithuania, Macedonia, Moldavia, Poland, Romania, Russia, Slovenia, Slovakia, Turkey and Ukraine. Location: Hotel Kung Carl, Stockholm Purpose:

• To provide an opportunity for discussion and presentations about the role of SITS in relation to the current situation in SITS EAST countries on reperfusion treatments in acute stroke, acute stroke management in general and stroke prevention, and

• To provide feedback on how the SITS coordination office can assist its users and centers in SITS EAST countries and how the SITS registry can be improved to better meet users’ needs.

• To stimulate research initiatives based on SITS data from SITS EAST participants

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Representatives Bulgaria Radina Fuchidzhieva Czech Republic Lubomir Jurak Croatia Branko Malojcic Estonia Janika Körv Hungary Attila Ferenc Csanyi Kyrgyzstan Inna Lutsenko Lithuania Dalius Jatuzis Lithuania Alexandras Vilionskis Macedonia Anita Arsovska Moldova Stanislav Groppa Poland Michal Karlinski Poland Adam Kobayashi Romania Stan Adina Dora Russia Alfia Godunova Slovakia Zuzana Gdovinova Slovenia Viktor Svigelj Ukraine Sergii Moskovsko Turkey Yakup Kresbi Turkey Atilla Ozcan Ozdemir Turkey Mehmet Akif Topcuoglu From SITS International Coordination Office: Nils Wahlgren, Chairman Niaz Ahmed, Vice Chairman Michael Mazya, International Network and Research Executive Tiago Moreira, International Network and Research Executive Charlotte Alme, COO Lena Liljeblad, Executive Assistant Johan Lundberg, Project leader registry development Shayer Rizvi, SITS User Services and IT Manager Opening, country presentations The meeting was opened with a presentation on the history behind SITS EAST and a general update on SITS. A representative from each country provided a 7 minutes presentation on the situation in the country, which formed an invaluable foundation for the coming discussions.

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Announcement of top SITS EAST centres Top 10 centres with regard to confirmed data:

1. Memorial Hizmet (Turkey); B Koyuncu, Y Kresbi 2. FN u sv Anny v Brne (Czech Rep); L Kounlova, R Mikulik 3. North Estonia MC (Estonia); V-M Rand 4. Univ MC Ljubljana (Slovenia); S Frol, V Svigelj 5. Krajska nemoc Liberec (Czech Rep); L Jurak 6. Faculty Hosp Nitra (Slovakia); M Brozman 7. Tartu Univ Hosp (Estonia); J Körv 8. Pomorskie Centrum Kopernika (Poland); W Fryze 9. FN Ostrava (Czech Rep); David 10. Faculty Hosp Trnava (Slovakia), G Krastrev

Top 10 centres with regard to number of recruited patients:

1. Naberezhnye Chelny BSMP Tartarstan (Russia); Shamil Musin 2. FN Plzen (Czech Rep); Petr Sevcik 3. FNu sv Anny v Berne (Czech Rep); L Kounlova, R Mikulik 4. Faculty Hosp Nitra (Slovakia); M Brozman 5. Nemocnice Ceske Budejovice (Czech Rep); M Nevsimaslova 6. Memorial Hizmet (Turkey); B Koyuncu, Y Kresbi 7. FN Brno (Czech Rep); S Peska 8. North Estonia MC (Estonia); V-M Rand 9. Tartu Univ Hosp (Estonia); J Körv 10. Univ MC Ljubljana (Slovenia); S Frol, V Svigelj

Top 10 centres on the weighed list, in which confirmed data was given slightly more weight than number of recruited patients, was finally announced:

1. FNu sv Anny v Berne (Czech Rep); L Kounlova, R Mikulik 2. Memorial Hizmet (Turkey); B Koyuncu, Y Kresbi 3. Faculty Hosp Nitra (Slovakia); M Brozman 4. North Estonia MC (Estonia); V-M Rand 5. Univ MC Ljubljana (Slovenia); S Frol, V Svigelj 6. Tartu Univ Hosp (Estonia); J Körv 7. Krajska nemoc Liberec (Czech Rep); L Jurak 8. Naberezhnye Chelny BSMP Tartarstan (Russia); Shamil Musin 9. FN Plzen (Czech Rep); Petr Sevcik 10. Pomorskie Centrum Kopernika (Poland); W Fryze

All these centres were congratulated for their excellent achievements. Their experiences can be good examples within the member countries and they can contribute with good advice to other centres within their countries.

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Group discussions – how can SITS coordination give the best support An important part of the SITS EAST meeting was the group discussions with the participant´s advice to the SITS coordination. The following is an attempt to document these advices and bring them to further attention in the communication between SITS members and SITS international coordination office (ICO): Summary of key points based on feedback/suggestions from meeting participants:

• SITS EAST increased visibility and communication issues:

o users want quarterly newsletters with status reports, o increased visibility at national meetings, etc., o video introduction or short history about SITS by SITS chair or vice chair.

Quarterly updates. o Newsletter with new publications send out to all members (as PDF), with a short

presentation about the article.

Comment/Action: Increased visibility is an important factor for the communication within SITS EAST including contact with SITS ICO. We are currently strengthening our team for networking and hope that we can contribute with this within the next few months. o An important task for National Coordinators is to inform SITS about national

meetings and to discuss how SITS ICO can act as support. SITS EAST NC:s can initiate SITS presentations at national meetings. At some occasions representatives from SITS coordination can attend, SITS material can be distributed. It is important to communicate that SITS is its members.

o We are preparing video presentations practically. This could be done for different purposes by different persons within SITS, intro/short history/instructions/updates. We hope that it can be realized soon.

o A presentation of each publication should be sent to each member with the newsletter, and if legally and budgetary possible also the article as a PDF. We will also explore when it is possible to include all contributing LC:s in appendix, at least as a web appendix.

• Publications for SITS EAST should include all authors in appendix. In scientific papers,

authorship should be listed in alphabetical order. Comment/Action: Authors will always be listed; what we should strive for is that all contributing Local Coordinators are listed in appendix. Regarding authorship, there are rules for lead and senior authorship roles, which are dependent on who initiated, drafted the manuscript, performed the statistics, etc. For other contributors, authors are listed in accordance with their contributing number of patients; if these are equal, alphabetical order should be a rule for authors invited because of high recruitment, or contributing in other ways.

• SITS should issue a yearly SITS EAST report.

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Comment/Action: SITS is currently releasing a yearly SITS report including a short overview of the SITS EAST region. We should consider whether it can be possible to also build a specific SITS EAST report and how it should be formed.

• There are problems with monitoring of data in SITS.

Comment/Action: All registries are depending on the participants´ ambition to correct and complete documentation. This is in the participant´s own interest since it is her/his own database. Nevertheless, SITS will always perform some monitoring, in some cases source data verification (for which participants accept when registering) or desk top monitoring, which is performed through the database. SITS ICO will assist its users if they experience any problems related to monitoring results.

• Will it be possible to compare certain results with another country – e.g. select a similar country socioeconomically with known good results. Meaning another option to compare results in addition to the existing.

Comment/Action: We will explore whether this is technically feasible, however we also need to take into consideration the legal part, as we now enter a new era in patient information security with the new GDPR legislation. This also requires a more complex approval procedure, from the country or centre with which one wants to compare.

• Can SITS issue an educational grant similar to ESO grant, “how is the modern stroke

environment?”

Comment/Action: At the moment SITS does not have funding for educational grants, but if the possibility is opened, e.g. in collaboration with ESO, it can be considered.

• Some users think that there are too many data points in the registry. Can they be

reduced?

Comment/Action: SITS is currently reviewing the protocols and evaluating whether some data items can be removed. There are also alternative protocols, such as IVT mini, APP mini to select between for those who prefer less data items. The drawback is that there is less information available for reports.

• There are problems for old users to log in.

Comment/Action: SITS is aware of the problem and working on a solution; password reset will soon be more visible and easy to use.

• Suggestion: SITS should publish its policy how to invite authors to publications on SITS website.

Comment/Action: This will be done.

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• Suggestion: Modification of selection of authors: NC can suggest 3 persons based not only on recruitment but on other achievements.

Comment/Action: Invitation to authorship should be based on important contribution to the scientific project, like initiation of the project, statistical work, drafting the manuscript, collecting the data. Currently, center coordinators are invited to join the scientific work based on the number of included patients, but it is reasonable that other factors also are considered, such as high quality of entered data. Within a national publication, the NC, in agreement with LC:s, could invite authors according to these principles.

• Can SITS help with report to decision-makers/government? Comment/Action: Yes, SITS can support reports to authorities in a given country, the greater the participation in SITS in the country, the more important weight of the report.

• Can SITS provide more authority to the NC in a given country? SITS should be more

present and expect centres to participate, distribute results from those who are involved. Like a SITS League – a challenge.

Comments/Actions: SITS could be more active to support the NC to contact different hospitals, to show that their participation is expected. SITS is a part of ESO:s effort to increase stroke care quality.

• Can SITS be used as a local database (off line?) Comments/Actions: The database is an online register. It is possible to download data to process offline, however data entry must be done with internet access.

• Can a formatted report in one centre be used by others?

Comment/Action: There is no direct technical support for this at the moment, but a design can be communicated and implemented locally.

• Suggestion: If a value is unusually high/low: Can you get a warning question: Are you

sure that this is correct? Comment/Action: A similar function already exists for some, but not all variables: Soft validation: user gets a warning but are allowed to save data. Hard validation for ranges: a number (e.g. blood pressure) cannot be larger or smaller than a set range. Stops the user from saving the invalid data, and user must change to a valid number to save the data.

• Can you create a desk top version with your own data?

Comment/Action: Access to your SITS data is online. You can download your data and report and treat them off line.

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• Could SITS data be entered through an app on your mobile or Ipad?

Comment/Action: Not at the moment, this has to be discussed. • SITS should be represented at national meetings. NC:s will inform SITS coordination

about meetings and discuss support and/or presence. NC:s can also propose to present SITS issues at national meetings.

Comment/Action: SITS coordination is ready to support and to some extent be present at meetings. Input from NC:s are encouraged. Some national issues:

• Bulgaria will hold its first national congress in April 2018. All invited. • Rumania has no reimbursement for thrombolysis. • Estonia has no national stroke program (strategic plan). Downloading data for quality and research The meeting discussed how to download reports and data for quality and research. Local coordinators can download data from their own centre and national coordinators from their own country for quality and research purposes. The SITS reports can be used for presentations and for planning. Scientific publications should always be based on data downloads and after cleaning the downloaded data for erroneous entry. How to facilitate the best research and what are the rules? All active participants in SITS has the right to suggest scientific projects based on international data. A local centre and a nation can assemble and publish a scientific project based on their SITS data without approval from SITS Scientific Committee. A national publication should invite local investigators as co-authors in relation to their recruitment. Scientific projects which aim to include data from several countries (e.g., a region or all SITS countries), must be submitted to SITS Scientific Committee for review and approval. SITS ICO will suggest invitation of co-authors based on recruitment by Local Coordinators from international centres, National Coordinators and members of the Scientific Committee according to standard rules. If the project requires participation from members of SITS ICO, this may qualify for co-authorship

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How to proceed – a regional executive committee for stimulation of scientific projects and high quality data SITS aims to hold meetings like the current one, with National Coordinators and some high recruiting Local Coordinators from all SITS EAST countries, annually or at least every second year. There was agreement during the discussion that an executive committee of 5-6 persons should be feasible to encourage participation in SITS in the different member countries, and to stimulate high quality data and scientific projects within the region. Adam Kobayashi, who has been Secretary of the previous SITS EAST committee, was asked to contact Robert Mikulik who could not be present at this meeting, to discuss the formation of the committee. Members at this meeting who are interested to join should contact Adam or Robert. There was an opinion at the meeting that the committee members should rotate although no specific time period was defined.