European Urology Today August/September 2017

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European Urology Today Official newsletter of the European Association of Urology

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Radical cystectomy: Reducing readmissions

3D printing technology in urology What’s new in 3D printing technology

Best practices to cut readmission rates Dr. J. Baack Kukreja

Vol. 29 No.4 - August/September 2017

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Dr. A. Dourado Menses

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Working conditions after urology training Insights and challenges on work conditions Dr. M. Garcia Sanz

Taking the next steps in cross border urological care eUROGEN has launched with 29 centres of excellence Michelle Battye EAU EU Policy Coordinator Sheffield (UK)

michelle.battye@ uroweb.org Since the approval by the European Commission, activities of eUROGEN, the European Reference Network (ERN) for patients with rare and complex urogenital diseases and conditions, is in full swing ahead with the establishment of its network. During the first official meeting last June in Noordwijk, important steps have been taken to set the foundation for this innovative cross-border cooperation platform. Nearly 40 participants were present to bring eUROGEN to its next phase; from approved plans to execution. One of the first decisions made was the appointment of Section Leads. Besides the already assigned three Workstream Leaders, these additional volunteers were selected to assist in clinical, research and educational matters of the specific workstreams. It was also decided that for each of the fifteen disease areas a specialist needs to be appointed to coordinate the development of the disease area. These volunteers will be responsible for inputting into the development of clinical guidelines where needed, seeking out best practices in multidisciplinary patient pathways and spreading innovation across the network – all with the full input from our urogenital Patient Advisory Group.

a clinical patient management system has been developed by the European Commission and is currently being tested. Since patients with rare urogenital diseases and complex conditions often require life-long care management, this system ensures continuity of patient care from the childhood and throughout various phases in a patient’s lifetime. The healthcare professional will complete the observations and test results in the system, which will be reviewed in European virtual Multi-Disciplinary Teams (MDT) for quicker diagnosis and to identify the best treatment. Currently evidence and data is lacking for many rare conditions. Collecting information on rare and complex urogenital conditions will lead to help achieve better clinical care and research outcomes. With consent of the patient (or parent’s consent, in case of a minor), data from the clinical patient management system will be collected in a harmonised and comparable way to improve clinical care and research outcomes. Collaboration Orphanet eUROGEN has also been invited to closely collaborate with Orphanet (www.orpha.net), the European database for rare diseases. Orphanet and eUROGEN represent a common endeavour to improve the lives of European patients with rare diseases by boosting knowledge acquisition and providing equal access to expertise. By working together, we hope to coordinate our complementary activities so as to produce, improve and share information and data in the field of rare diseases. Participants of the first eUROGEN meeting last June in Noordwijk, the Netherlands

Together with the ePAG (Patient Advisory Group), eUROGEN will collaborate to update the Orphanet database by publishing a scientific paper and present this as evidence of the changes proposed to the codification. This will assist in setting a standard nomenclature of rare diseases, which will provide stakeholders with a common, controlled language to improve the interoperability between health information systems and databases and registries.

Communication To directly reach as many European patients as possible, eUROGEN recognizes the role of a solid and responsive communication strategy with a corporate branding and the right tools to properly inform patients all over Europe. The proposal for the new logo and the website was approved in Noordwijk, and What’s next together with the communication team of the EAU, a Now the boundaries are becoming more and more new website was developed in line with the corporate clear, we can fill in the gaps before eUROGEN can branding. The website, which can be found at eurogen-ern.eu, will serve as the main portal for external relations to access the latest information on various diseases, the network of health care professionals and the work flow of eUROGEN. For those involved in eUROGEN a collaborative IT platform has been launched as well. This online document management system allows all healthcare providers, patient representatives and network managers to archive and download eUROGEN-related information such as minutes of meetings, organisational documents, updates, official announcements and to work together on scientific publications. Only authorised members of eUROGEN can access this platform and share their content with the other members. The collaborative platform, however, will not contain any patient related information. Life-long patient care To implement an effective new way to use IT in supporting cross border multidisciplinary teams of the best experts in Europe to provide a diagnosis, recommendations for treatment and second opinions,

Take out the Urology Week poster inside this EUT and hang it on your wall

WEEK 2017

help its first patients, which is expected before the end of the year. In the coming months the operational board of eUROGEN will focus on launching the clinical patient management system, developing the first documentation on the different disease areas and starting the development of clinical guidelines. Thanks to the commitment and enthusiasm of its current members, eUROGEN has had a kick-start. There is still a long way to go and challenges to overcome, but we are convinced that eUROGEN will

achieve success. The Network Coordinator Professor Chris Chapple said “the ERNs are an incredible new opportunity to provide the framework for cooperation between healthcare providers and experts at European level. I am honoured to be working with so many of the best experts in Europe and I am personally committed to harness the expertise of the EAU and link it to the activities of the ERN”. If you are interested in receiving updates on the activities of eUROGEN, you can subscribe to our newsletter via the eurogen-ern.eu website (left corner).

www.eau18.org

Abstract submission now open! Deadline: 1 November 2017

25-29 SEPTEMBER

August/September 2017

European Urology Today

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