A look back at VASCERN Days 2019

This year our annual seminar and board meeting, VASCERN Days 2019, travelled to the vibrant city of Brussels, Belgium! The two day seminar took place from November 7-8^th at Radisson Blu Royal Hotel and was attended by close to 100 participants (including our healthcare professionals, patient advocates and guest stakeholders).

The first morning started with a welcome and introduction by VASCERN Coordinator, Prof. Guillaume Jondeau, where our members (healthcare professionals and patient advocates) were all warmly welcomed and the various stakeholders introduced. We were also lucky to be able to introduce the representatives from 4 of our new Affiliated Partners from Austria, Malta, Spain and Slovenia, attending their first VASCERN Days!

Marine Hurard, VASCERN Project Manager, then commenced the Board by delving into the Terms of Reference (ToR) to be updated and approved by our Board. VASCERN’s authorship guidelines, event endorsement agreement and rules for exclusion from our network were also reiterated and any questions or comments were managed before the ToR were formally approved. See the ToR presentation here.

Additional topics she covered included:

• An update of VASCERN’s EU co-funding projects
• The monitoring indicators that were sent to the European Commission for our network in October
• VASCERN’s enlargement plans and cooperation with other ERNs, introducing the affiliated partners that have applied to VASCERN and discussing the call for new HCP Full Members to join the existing 24 ERNs. See the presentation here.

An overview of VASCERN’s communication and dissemination activities was given by Natasha Barr, VASCERN Project Officer, that showcased the significant increase this year in website views and followers on our various social media networks. See the presentation here.

This was followed by an interesting presentation by Yanis Mimouni, European Joint Pogramme on Rare Diseases (EJP-RD) project manager, on the goals and the various pillars of the EJP-RD, along with the numerous opportunities for ERN members (including the EJP RD Joint Transnational Call (JTC) 2020). See the full presentation here.

After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).

Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation here

This was followed by:

• European Patient Advocacy Group (ePAG) Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here.

• A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.

• Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation here

• Ethical and Legal issues by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here.

• A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here.

• The latest Clinical Patient Management System (CPMS) developments, by Caroline Paquier (European commission – DG Health) and Hany Mina (OpenApp), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation here.

After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.

This session lasted for the rest of the afternoon and much work was done by everyone.

The first day of the seminar concluded with an hour long ePAG meeting, where 10 patient advocates, in addition to Ines Hernando (Eurordis), examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account and briefly the creation of “patient journeys“. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases using the CPMS.

Day two commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:

• A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.
• Various ideas for European patient passports, educational materials and “tweetorials”
• The invitation of non-VASCERN members to live events and the accreditation of activities/educational events
• Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians

Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions:

• The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.

• The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.

• The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.

After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.

At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included:

• HHT: Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).
• HTAD: Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.
• MSA WG: Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.
• PPL: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).
• VASCA WG: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.

Networking

Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La Grand–Place for a souvenir!

The VASCERN Coordination Project-Team would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.

We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here

We look forward to seeing you next year!