This is a Project Group Meeting for all members of the EuRRECa Workpackage and Expert Working Groups, Independent Advisory Board and representatives of ESE, ESPE, Endo-ERN, DGSANTE and JRC who should register via the Webinar link below.
Monday 9th March, 10:50-13:10 CET (09:50-12:10 UK)
EuRRECa Project Group Meeting Agenda
Project Group: Monday 9th March 2020, 10:50-13:10 CET (Webinar)
10:50 EuRRECa Project Group Meeting (Webinar)
10:50 – 11:00 Introduction
11:00 – 11:10 e-Reporting of Rare Endocrine Conditions Demo & Activity Report Summary (WP06) – Faisal Ahmed, Salma Ali [e-REC Activity Report Feb 2020]
11:10 – 11:20 Core Endocrine Registry Demo & Activity Report Summary (WP06) – Faisal Ahmed, Jillian Bryce [Core Registry Activity Report]
11:20 – 11:25 Dissemination & Access (Rules of access, next deliverables) (WP02) – Olaf Hiort [Data Access Policy]
11:25 – 11:30 Quality Assurance & Evaluation (Toolkit and results, next deliverables) (WP03) – Luca Persani, Yllka Kodra [Interim Quality Report]
11:30 – 11:35 Core Outcomes (Generic and Condition specific, next deliverables) (WP04) – Olaf Dekkers [Condition-Specific Outcome Report]
11:35 – 11:40 Patients, Parents & Ethics (Patients perspectives, next deliverables) (WP05) – Martine Cools [Patients Perspectives on PRO Report]
11:40 – 11:50 Workpackage discussions
11:50 – 13:10 Expert Working Group (slide templates to be collected 1 week in advance)
Business Meetings
13:15 – 14:00 (CET) Project Governing Board Business Meeting (webex)
15:00 – 16:00 (CET) Independent Advisory Board Business Meeting (Skype)
