Rare Endocrine Registries Workshop

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
1300 Registration
Session 1 EuRRECa
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
1450 Discussion All
1500 Coffee
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
1700 Discussion
1715 Close of Day 1
1900 Dinner
13 December 2019
0830 Registration
Session 2 Lessons From Existing Registries
0900 Industry representatives to present their experience of the strengths and weaknesses of their registries
1030 Discussion
1045 Coffee
1115 Academic registries to present their experience of the strengths and weaknesses of their registries
1245 Discussion
1300 Lunch
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
1500 Discussion
1515 Close & Announcement of Call