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.

Participants are invited to complete the full registration form and pay a registration fee (£50 standard until 5th December – includes workshop dinner on Day 1).  To register click here rareendocrineregistries.eventbrite.co.uk 

Map of the venue and nearby hotels


Registries For Rare Endocrine Conditions Workshop
Kelvin Hall, University of Glasgow
1445 Argyle Street, Glasgow G3 8AW
12-13th December 2019
Thursday 12 December 2019
1300 Coffee & Registration
1400 Introduction & aims of workshop Faisal Ahmed, School of Medicine, University of Glasgow, Glasgow
Session 1 The Background To EuRRECa – European Registries for Rare Endocrine Conditions
1410 Endo-ERN – achievements and future directions Alberto Pereira, Leiden University Medical Center, Leiden  
1420 The current landscape of registries for rare endocrine conditions Salma Ali, School of Medicine, University of Glasgow, Glasgow  
1430 An overview of EuRRECa  Faisal Ahmed, School of Medicine, University of Glasgow, Glasgow  
1440 Discussion  
1500 Coffee
Session 2 EuRRECa – Current Activity
1530 Core Clinical Outcomes Olaf Dekkers, Leiden University Medical Center, Leiden
1545 Quality of registries Yllka Kodra, National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome  
1600 Endocrine patients and their views of registries Arlene Smyth, Turner Syndrome Support Society, UK  
1615 Dissemination and access policies Olaf Hiort, University Medical Center Schleswig-Holstein, Luebeck  
1630 First year results of EuRRECa Faisal Ahmed, School of Medicine, University of Glasgow, Glasgow  
1645 Discussion  
1700 Close of Day 1  
1900 Dinner – One A The Square, University of Glasgow, University Avenue
Friday 13 December 2019
0830 Coffee & Registration
Session 3 Disease Registries & Their Value  
0900 The views of the European Medicines Agency Tom MacDonald, School of Medicine, University of Dundee, Dundee  
0920 Perspectives from rare disease patients Virginie Bros Facer, Scientific Director, EURORDIS  
0940 The views of the professional societies Helen Gregson, Chief Executive Officer, European Society of Endocrinology  
1000 Making sense of messy data Jim Lewsey, Health Economics & Health Technology Assessment, University of Glasgow
  1020 Discussion  
1030 Coffee
Session 4 Lessons From Existing Registries  
1100 Product or disease specific registries? 10+ years’ experience from long-term registry studies with Norditropin Alberto Pietropoli, Global Scientific Advisor, Novo Nordisk  
1115 KIGS – 25 years of real-world data in growth hormone treatment Roy Gomez, Global Medical Director, Endocrine & IEM, Pfizer Rare Disease  
1130 I-DSD/CAH – a project built on consensus and partnerships Faisal Ahmed, School of Medicine, University of Glasgow, Glasgow  
1145 ENSAT Nicole Reisch, Ludwig-Maximilians-Universität München, Munich  
1200 Paediatric diabetes registries: SWEET and ‘the others’ Zdenek Sumnik, Second Faculty of Medicine, Charles University, Prague  
1215 ERCUSYN – an example of fruitful European collaboration Elena Valassi, Hospital de la Santa Creu i Sant Pau, Barcelona  
1230 Patient based platforms for patient benefit: the RUDY study Kassim Javaid, Medical Sciences Division, University of Oxford, Oxford  
1245 Lunch
Session 5 Emerging Consortiums & Registries  
1330 Real-life experience with starting a new registry for rare thyroid disorders Edward Visser, Erasmus Medical Center, Rotterdam  
1345 The ECLip registry for patients with lipodystrophy – challenges and chances Julia v. Schnurbein, University Hospital Ulm, Ulm  
1400 EuroCHI – from institutional registry to common data sets Klaus Mohnike, Otto-von-Guericke-Universität Magdeburg, Magdeburg  
1415 EuRR-Bone meets EuRRECa: integrating rare bone with rare mineral disorders  Natasha Appelman-Dikjstra, Leiden University Medical Center, Leiden  
1430 An international Turner syndrome registry : challenges and possibilities Franciska Verlinde, Belgian Study Group for Paediatric Endocrinology and Diabetology
1445 Discussion  
1500 Announcement of Call For Applications For Projects

RCPCH CPD application in process

This workshop is generously supported by the Office for Rare Conditions, Glasgow, the University of Glasgow and an unrestricted education grant from Novo Nordisk.

Call for Applications to Develop Registries