European Reference Network (ERN) for craniofacial anomalies

The meeting took place at the Wilhelmina Children’s Hospital in Utrecht, hosted by Corstiaan Breugem and Aebele Mink van der Molen on the 8 June 2018. Several members of our COST Action participated in various roles, and Martin Persson talked about ECCE. During the 2-day meeting, fruitful discussion took place on how the two networks can collaborate in the future.
Also attending, part of the meeting, was Paul Boom, Dutch Ministry of Health.

Paul Boom, Dutch Ministry of Health - speaking at the event


 

Core Group Meeting Toulouse, France

The core group met in Toulouse, with the primary aim of the meeting was to detail questions for data collection for Working Groups 1, 2, 3. The went over all the questions generated and discussed in detail on how to progress so we the work can be launched at the conference in Niš in September.  One aspect that was discussed is how we measure the access and equality of care, so we reflected on the European Patient Forum’s definition of this which was:

Available - in a specialised service all components of care should be available 

Adequate- this is about quality of care

Accessible-  is full care accessible throughout all stages of the treatment duration 

Appropriate- service should be relevant to the health needs of different populations or groups, as healthcare needs to be inclusive. 

Affordable- this means that people can access healthcare services without suffering financial hardship

source: http://www.eupatientaccess.eu/page.php?i_id=19 

 

The core group will in the near future compile all the questions, then revise and after that send out to the members of the Action for their feedback, with the objective that the questions will be finalised before the conference in Serbia.  

 


 

The American Cleft Palate–Craniofacial Association

Martin Persson attended the 75th annual meeting of the The American Cleft Palate–Craniofacial Association that had about 800 participants from 23 countries. At the conference, Martin presented a one-hour presentation about the European project IHEM - How Healthcare Professionals Can Receive Training In How To Conduct An Initial Screening about The Educational Outcomes In Individuals With A Cleft.  In that session, information about the ECCE was presented since that our Action focus is very relevant to the overall outcomes of that project.  Besides from the presentation, a significant amount of networking took place and many individuals thought the ECCE project is interesting and could consider joining as an International Partner in the near future.

 

 


 

Core Group Meeting in Tallinn, Estonia 

The core group met in order to generate a strategy to move Action forward on the 16 March 2018. Feedback on the outcomes of the first working group meetings in Zagreb – patient experience and impact, the function of the multidisciplinary team and the area of policy and funding indicated that a good start had been made in all work groups and summaries had been provided after the Zagreb meeting.

It was again stressed that this Action was not about clinical comparisons or approaches to different types of medical technique but about service delivery and meaningful outcomes for patients.

The first step is to get a snapshot of current cleft care across all the participating countries – at least one centre per country. There followed a long discussion about how this should be done, what form data collection should take and about the size of samples and timeframes. It was agreed that each WG leader should generate a set of questions that will be discussed at the next core group meeting. 

 

In addition, discussion on how more countries can join our Action and how we will prepare for the conference in Niš, Serbia in September.    

 


European Parliament

Several members of the COST Action ECCE attended the breakfast event at the European Parliament on the 27 February 2018, hosted by MEP Sean Kelly and accompanied by a diverse audience of other MEPs and policymakers, was an opportunity to get clefts and craniofacial anomalies on the Parliament’s agenda. The aim is to start pressing the European Commission for specific resources for cleft and craniofacial care in order to reduce the vast inequalities across Europe, enabling equal access to good quality lifelong cleft care. Martin Persson presented the purpose of the COST Action ECCE for the audience and how the Action will contribute to addressing these European challenges. Also participating was Karina Marcus from the COST office that promoted how vital role the COST Actions has in advancing research and influence policies.


 

School of Dental Medicine, The University of Zagreb, Croatia

The second MC meeting and first workgroups meeting took place at the school of dental medicine in Zagreb on the 25 - 26 January 2018 with 38 Action members attending the meeting and two representatives from the COST office.  The event was fruitful and initiated the collaborative work towards the stipulated objectives of the workgroups.  

WG1: primary level, patient as beneficiary

WG2: organisational context, the multidisciplinary clinic

WG3: funding and policies, administration and resources  

Also, on the evening of the 24 January, an outreach event that included information about ECCE and training about the psychosocial aspects for patients undergoing appearance altering procedures, for about 30 healthcare professionals in Zagreb.

 

      

 

 

 


 

Tawanchai Cleft Center, Thailand 

As part of a project to initiate collaboration between Khon Kaen University and Kristianstad University, a series of psychosocial workshops for healthcare professionals that works with individuals with cleft lip and palate or craniofacial conditions was conducted. Between 22 - 24 November 2017 approximately 50 - 60 healthcare professionals participated in the workshops and during that time the ECCE was presented as well.      

 


University Medical Centre Ljubljana, Slovenia 

Our Slovenian member Martina Drevensek arranged on the 20th of October a training session for 45 Healthcare professional facilitated by Gareth Davies and Martin Persson that attended in the capacity of their respective organisations - European Cleft Organisation and Kristianstad University.  The next day a family educational day was arranged and 12 families attended to receive information and participate in fruitful discussions. In both events, information about ECCE was presented.    

 


Cleft lip and palate conference in Thessaloniki, Greece

A conference was arranged by our Greek members - Aikaterini Koleventi and Maria Bigaki for the local healthcare professionals.  At the conference, other members of the Action (Youri Anastassov, Radu Spataru, and Martin Persson) presented their research and experience in this field, including a special section about ECCE.  About fifty healthcare professionals attended the two-day conference.  

   

  


1st Management Committee Meeting

The first meeting of the Action took place on the 5 October 2017 in Brussels.  At this meeting, the members of the Action introduced themselves and general information on COST mechanism and on the funding and reporting of coordination activities. Dr Martin Persson (SE) was unanimously elected as the Chair and Mr Gareth Davies (NL) was unanimously elected as the Vice-Chair. 

The following persons were appointed to the following roles: 

   WG1 – Primary level, patients as beneficiaryLeader: Julija Radojcic(Serbia 

   WG2 – Organisational context, the multidisciplinary clinicLeader: Jean Calleja Agius(Malta)

   WG3 – Funding and policies, administration and resourcesLeader: Triin Jagomagi (Estonia)

   WG4 – Health system goalsWill be appointed after 2 years

   WG5 – Dissemination and communicationLeader: Thomas Nilsen (Norway)

   STSM coordinator: Nick Sharratt (UK)

   Science Communication Officer: Aikaterini Koleventi (Greece)