The Office for Rare Conditions, Glasgow is holding a two day workshop on the 12th and 13th of December 2019 in Glasgow on the subject of Registries for Rare Endocrine Conditions.
Through the work performed as part of the European Registries for Rare Endocrine Conditions (EuRRECa) project (www.eurreca.net), groups have been identified that are closely involved in an international endocrine-condition registry.
The workshop will be divided into three sessions, the first session (12th Dec pm) will be dedicated to providing an update on the EuRRECa project, the second session (13th Dec am) will select some of the registered participants to share their experience of the international registries that they have been involved in and the final session (13th Dec pm) will cover the views of stakeholders including the EMA, EURORDIS and professional societies.
The workshop is limited to about 100 participants. Participants who already registered interest are now invited to complete the full registration form and pay a small registration fee (£50 early bird, £100 standard – includes workshop dinner on Day 1). From 1st July 2019 workshop registration will be opened to all. To register click here rareendocrineregistries.eventbrite.co.uk
This event is supported by an unrestricted education grant from Novo Nordisk.
|Registries For Rare Endocrine Conditions Workshop
Kelvin Hall, University of Glasgow
12-13th December 2019
|12 December 2019|
|1400||Introduction & Aims Of Workshop||Faisal Ahmed Glasgow|
|1410||EndoERN – Achievements to date and future directions||Alberto Pereira Leiden|
|1420||The Current Landscape of Registries for Rare Endocrine Conditions||Salma Ali Glasgow|
|1435||An Overview of EuRRECa||Faisal Ahmed Glasgow|
|1530||Core Clinical Outcomes||Olaf Dekker Leiden|
|1550||Quality of Registries||Yllka Kodra Rome|
|1620||First year results of EuRRECa||Faisal Ahmed Glasgow|
|1640||Dissemination and Access Policies||Olaf Hiort Luebeck|
|1715||Close of Day 1|
|13 December 2019|
|Session 2||Lessons From Existing Registries|
|0900||Industry representatives to present their experience of the strengths and weaknesses of their registries|
|1115||Academic registries to present their experience of the strengths and weaknesses of their registries|
|Session 3||Views Of The Stakeholders|
|1400||The views of the EMA||Tom MacDonald ENCEPP Project|
|1420||The views of the patients||Virginie Bros-Facer EURORDIS|
|1440||The views of professional societies||Helen Gregson ESE|
|1515||Close & Announcement of Call|