This proposal lays out the Work Programme for 2017 within the contents of the Multiannual Work Plan for the European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO). ERN CRANIO involves teams from 29 European hospitals (10 Member States) that provide care, education, teaching, research and management of rare craniofacial anomalies, cleft lip/palate and ENT disorders. Our vision is that the best multidisciplinary initial care for all those with craniofacial anomalies and ENT disorders is not a privilege to be purchased but a moral right secured for all European patients.
Our MISSION is to consistently and persistently strive towards achieving our vision through:
1. Establishment and management of a steady referral network for patients with craniofacial anomalies and ENT disorders throughout Europe; 2. Improvement of the quality of care, by enhancing diagnosis, treatment and follow-up of the patients with rare craniofacial anomalies and ENT disorders; 3. Minimization of the deviation from our operational standards and sharing best practices through suitable quality improvement initiatives, while monitoring their effectiveness using measures and indicators; 4. Stimulating innovation through multicentre research projects on (genetic) causes, pathophysiology, and associated problems, and introduction of eHealth; 5. Supporting the continuous learning and development of all our members by providing high quality educational and training opportunities to medical, nursing and other healthcare professionals; 6. Disseminating gained knowledge, making it available to all stakeholders.

In Year 1, ERN CRANIO will focus on collecting and analysing the available data on diagnoses, treatment, follow-up programmes, education and eHealth. In addition, the aim is to further expand the network in the first year by including relevant partners and experts. The results of the first year will set the agenda for subsequent years.

The European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO) was officially established in March 2017 and is one of 24 European Reference Networks co-funded by the European Union (Health Programme). ERN CRANIO involves teams from 29 European hospitals (11 Member States).
ERN CRANIO focuses on facilitating professionals throughout Europe to share gained knowledge on rare craniofacial anomalies and ENT disorders. Cooperation at EU level makes a real difference to these patients and the healthcare professionals helping them. No country alone has the knowledge and capacity to treat all types of rare, complex and low prevalence conditions, but with the cooperation and exchange of knowledge at European level through ERN CRANIO, patients across the EU will have access to the best expertise available.

The overall objectives of ERN CRANIO are:
1. To establish and manage a steady referral network for patients with craniofacial anomalies; cleft lip/palate and orthodontologic anomalies; and ENT disorders throughout Europe;
2. To improve the quality of care, by enhancing diagnosis, treatment and follow-up of the patients with rare craniofacial anomalies and ENT disorders;
3. To minimize any deviations from our operational standards and to create best practices through suitable quality improvement initiatives, while monitoring their effectiveness using measures and indicators;
4. To stimulate innovation through multicentre research projects on (genetic) causes, pathophysiology, and associated problems, and introduction of eHealth.
5. To support the continuous learning and development of all our members by providing high quality educational and training opportunities to medical, nursing and other healthcare professionals;
6. To disseminate gained knowledge throughout Europe and outside, making it available to all stakeholders;

In the first year ERN CRANIO focused on establishment of an effective network and governance structure, organization of network meetings, collecting available guidelines, standards of care, outcome sets, training programmes, implementation of the Clinical Patient Management System, and development of a public website. The ERN Collaborative platform was used for internal network communication.

The ERN CRANIO network is organized in diagnostic groups and cross over work packages. All working groups have their own coordinator representing one of ERN CRANIO HCPs.
To share knowledge and expertise within the network and disseminate results, network meetings with all ERN CRANIO members are organized. The Kick-Off meeting was organized in Rotterdam (NL), and the second network meeting took place in Paris (FR).
The public website is used to disseminate information to all relevant stakeholders for the ERN CRANIO network.

The network activities in the first Year were aimed at setting up a steady referral network for patients with craniofacial anomalies and ENT disorders and identifying best practices in our network related to standards of care, outcome measurement and training. Development of CRANIO communication channels (ERN collaborative platform and a public website) facilitates the dissemination of gained knowledge to patients, healthcare professionals, policy makers and the lay public. The network activities are grouped under six work packages; Management, Standards of Care, Outcome Measurement, eHealth, Training and Dissemination.

Stated in the mission of ERN CRANIO, the network aims to support the continuous learning and development of all our members by providing high quality educational and training opportunities to medical, nursing and other healthcare professionals. The onsite training program started in year 1 and already resulted in a number of fellows following a high level training program in one of the expert centers of the network. This program will be continued and further developed in coming years as this in one of the areas where our network can bring added value. Especially members from centers with less experience in the field of craniofacial anomalies and ENT disorders are invited to join the program.
In the first year the ERN CRANIO kick off meeting (Rotterdam, NL) and the annual network meeting (Paris, Fr) have been organized and this was extremely important for the purpose of collaboration, involvement and transparency. Between 60–90 participants attended both meetings and most HCPs were well represented. From now on these network meetings will be organized once a year and in addition workstream specific meetings will be organized. To become a steady referral network for patients with craniofacial anomalies and ENT disorders, these meetings are crucial.
One of the main objectives for our ERN is to improve quality of care, by enhancing diagnosis, treatment and follow-up of the patients with are craniofacial anomalies and ENT disorders. Before improvement can be made, it is important to know what is already available on guidelines and standards of care. Therefore a baseline inventory on available standards of care and guidelines was made. This overview is further specified within the different workstreams and will set the agenda on guideline development for coming years.
The registration of first users for the Clinical Patient Management System (CPMS) is also considered an important step for our ERN. In the pilot phase ERN CRANIO started the initial panel set up with a group of neurosurgeons for reviewing neurosurgical problems in craniosynostosis. The aim is to increase the number of patient cases reviewed during the course of the second year, involving more specialties and complex patient cases.

ERN CRANIO by-laws.
Baseline inventory on available guidelines and standards of care.
ICHOM implementation plan.
Framework for CPMS implementation.
ERN CRANIO onsite training program.
ERN CRANIO public website (www.ern-cranio.eu).

DISSEMINATION: ERN CRANIO public website, ERN CRANIO illustrations, CEO hospital meeting, ERN information sessions, translation of guidelines.
EVALUATION: The HCPs of ERN CRANIO underwent a 12-months evaluation in February 2018. For each HCP the numbers (year 2017) on clinical activity for the various diagnoses were collected.