In the second year of the ERN CRANIO, we will continue to work on sharing knowledge and expertise within our current network of 29 HCP's from 11 countries. It is most likely that we will expand our network in 3 different ways: 1. from within by expanding the field of expertise from participating HCP's; 2. with HCPs from new countries, particularly from Eastern Europe, and 3. with additional representative from patient advocacy groups via ePAG.
We have expanded the coverage of diseases somewhat regarding the incorporated ENT disorders, by including congenital nasal en neck anomalies.

The workpackages management, guidelines and standards of care, eHealth (incorporating CPMS), outcome, education and training, and dissemination will remain the same, but with new set goals for 2018.

There is an urgent need for a registry on craniofacial and ENT malformations, but unfortunately our registry grant application was put on the reserve list. This means that for the next year's budget we will have to include a significant amount of money to finance the start of a registry.
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CRANIO - This proposal outlines the activities of ERN CRANIO for the years 2019, 2020 and 2021, which are line with the FPA. ERN CRANIO aims to support specialised centres across Europe to provide care of the highest quality to patients with rare and/or complex craniofacial anomalies and Ear Nose and Throat (ENT) disorders. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific standards of care, initiation of a quality improvement cycle so that ERN-accepted standards of care can be monitored and refined, data collection and benchmarking via use of a registry, organisation of professional training, collaborative, multi-centre research and full implementation of the Clinical Patient Management System. Disseminating information on the network and its outputs to target groups will be crucial, in addition to evaluating progress.
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This is the application for the ERN on Rare craniofacial anomalies and ENT disorders.

24 experts centers from 10 countries will join in this project, focusing on three major workstreams:
1. Craniofacial anomalies
2. Cleft lip/palate and odontologic disorders
3. ENT disorders

Aim is to make high level quality of care for craniofacial anomalies and ENT disorders available to all European citizens. This will be achieved by upgrading the service level for specific conditions provided by the ERN members, and by establishing craniofacial centers in countries that currently lack this care. The work group will incorporate professionals, relevant scientific societies and representatives from patient's societies.
The workplan involves assessment of available guidelines, develop missing ones, share experiences with teaching and training and making them available for those that request it, support travelling of the professionals with high level expertise to help out teams that lack this expertise, promote colaboration with regard to research. Where possible, data will be collected in a uniform way (mainly based on the principle of the ICHOM consortium) to enable benchmarking and promote implication of best practice at all centers. All knowledge will be shared at national, European and worldwide levels.
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