2nd EuRRECa Project Group Meeting

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)