4ème colloque ERN Cranio - 9-10/11/2018

Réunion de travail du groupe "Dental anomalies" piloté par le Pr Bloch-Zupan.

Summary Report

“Health Professionals, researchers and patient representatives gathered in Uppsala, Sweden on 9-10 November 2018 for the 3rd ERN CRANIO meeting. The meeting was opened by the CEO of Uppsala University Hospital, Mr. Eric Wahlberg, and began with a morning of educational sessions on the topic of psychology. We were honoured to have Dr. Lisa Ekselius, Dr. Fotis Papadopoulos and Dr. Karin Tillman from Uppsala University Hospital present their work on neurocognitive and neuropsychiatric outcomes in craniofacial malformations. Karin Tillman and colleagues have since published one of the papers presented at the meeting, titled ‘Increased Risk for Neurodevelopmental Disorders in Children with Orofacial Clefts’. Dr. Jolanda Okkerse from Erasmus MC Rotterdam presented on Post Traumatic Stress in parents and patients following craniofacial surgery and Dr. Louise Dalton from John Radcliffe Hospital, Oxford presented on Clinical Psychology and Craniofacial care: Priorities and models of delivery. This session was extremely informative and highlighted the psychological impact craniofacial anomalies/ENT disorders can have on individuals and the importance of making effective psychological care available for these patient groups.

Friday afternoon began with an update on key network activities by the ERN CRANIO coordinator (Dr. Irene Mathijssen). Topics discussed included the upcoming call for new members to join the ERN, expected to be launched in April 2019, and the impact of Brexit on the ERNs. On behalf of the patient support groups, Gareth Davies introduced the patient representatives for ERN CRANIO and their view on patient involvement within the network. Ulrich Thomale from Charité Berlin outlined how to use the Clinical Patient Management System (CPMS). All CRANIO members can use this online platform to discuss complex patient cases with their colleagues. The group of neurosurgeons is already actively using the CPMS and all others are invited to register as well.

On Friday afternoon, we were also honored to hear our guest speaker Anne Klassen from McMaster University, Canada speak about patient reported outcome measures (PROMS) and the FACE-Q module. This was an interesting and engaging presentation and it served to stimulate discussion on the value of PROMS within our ERN. The meeting continued with an update from the scientific committee, with Daniel Nowinski from Uppsala University Hospital outlining the scope of the scientific committee and proposing a framework for ERN CRANIO scientific publications. The meeting closed with updates on current ERN CRANIO projects: guideline development for craniofacial microsomia, collecting outcome data on cleft lip/palate and supporting an affiliated partner in Eastern Europe. On Friday evening the group gathered in Linnaeus Garden for a nice dinner.

Saturday morning featured a presentation on the development of the ERN CRANIO website. One of the ambitions of the network is to translate the website into all European languages for which we need help from all of our network partners. The ERN CRANIO website will be under ongoing review and we welcome your feedback. Participants then voted on who will host the next ERN CRANIO annual meeting in 2019. It was a close call but Rome got the most votes. The 4th ERN CRANIO meeting is scheduled for 29th-30th November 2019 in Rome.”

After the combined meeting the group split up into separate work streams/working groups:

  1. Dental - led by Agnes Bloch-Zupan

  2. Cleft lip and/or palate led by Peter Mossey

  3. Craniofacial Microsomia led by Eppo Wolvius

  4. Craniosynostosis led by Marie-Lise Van Veelen/David Johnson

  5. ENT led by Bas Pullens

  6. Psychology

  7. Genetics

  8. Beckwith-Wiedemann Syndrome and Tongue Anomalies led by Caroleen Shipster