ERN eUROGEN Webinar 128: ERN eUROGEN Registry Update скачать в хорошем качестве

ERN eUROGEN Webinar 128: ERN eUROGEN Registry Update

This webinar took place on 9 September and was presented by Lotte Boormans and Loes van der Zanden, who joined for the discussion at the end. Lotte is the ERN eUROGEN Registry Manager, and Loes is the ERN eUROGEN Registry Coordinator. Loes is responsible for the ethical and legal issues concerning the registry, and Lotte arranges the daily functioning of it. This presentation gave an update about the ERN eUROGEN registry. It explained the functioning of the registry and outlined the registry’s current status, including which Health Care Providers (HCPs) arranged the necessary ethical and legal approval, and patient numbers per HCP. In addition, requirements for reimbursement for data entry, results as shown in the data reports, and approved data applications were discussed. The included data elements, such as clinical practice snapshots, follow-up eCRFs and PROMs were touched upon, as well as the data quality. Lastly, an update on the SPIDER pilot was given. ERN eUROGEN is the European Reference Network for rare and complex uro-recto-genital diseases and conditions. Our multidisciplinary teams of experts are able to diagnose, suggest treatment or surgery, and then provide post-operative and transitional support. We have full members and affiliated partners across the majority of EU Member States. For more information or to contact us: Web: www.eurogen-ern.eu Email: eurogen@uroweb.org LinkedIn: / ern-eurogen Twitter/Instagram: @ERN_eUROGEN Facebook: / erneurogen YouTube: https://bit.ly/eUROGENyoutube ERN eUROGEN is a European Reference Network (ERN) approved by the ERN Board of Member States (BoMS). For more information about the ERNs and the EU health strategy, please see: https://ec.europa.eu/health/european-... The ERNs are funded by the European Union. The views and opinions expressed in this webinar are those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor HaDEA can be held responsible for them. Timestamps: 00:30 Introduction by ERN eUROGEN Programme Manager 03:14 Presentation by Lotte Boormans 39:18 Questions