Rare Endocrine Registries Workshop

The Office for Rare Conditions, Glasgow held a two day workshop on the 12th and 13th of December 2019 in Glasgow on the subject of Registries for Rare Endocrine Conditions.

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
Moderator – Faisal Ahmed
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
Moderator – Alberto Pereira
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  
Moderator – Olaf Hiort
0900 Perspectives from rare disease patients Virginie Bros Facer, Scientific Director, EURORDIS
0920 The views of the professional societies Helen Gregson, Chief Executive Officer, European Society of Endocrinology   
0940 Making sense of messy data Jim Lewsey, Health Economics & Health Technology Assessment, University of Glasgow
1000The value of registries and regulatory science, Tom McDonald, School of Medicine, University of Dundee, Dundee
 1020 Discussion  
1030 Coffee
Session 4 Lessons From Existing Registries  
Moderator – Olaf Dekkers
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  
Moderator – Yllka Kodra
1330 Real-life experience with starting a new registry for rare thyroid disorders Edward Visser, Erasmus Medical Center, Rotterdam  
1340 The ECLip registry for patients with lipodystrophy – challenges and chances Julia v. Schnurbein, University Hospital Ulm, Ulm  
1350 EuroCHI – from institutional registry to common data sets Klaus Mohnike, Otto-von-Guericke-Universität Magdeburg, Magdeburg  
1400 EuRR-Bone meets EuRRECa: integrating rare bone with rare mineral disorders  Natasha Appelman-Dikjstra, Leiden University Medical Center, Leiden  
1410 An international Turner syndrome registry : challenges and possibilities Franciska Verlinde, Belgian Study Group for Paediatric Endocrinology and Diabetology
1420 Developing condition specific modules: the Pituitary module, Alberto Pereira, Leiden University Medical Center, Leiden    
1430 Future Direction & Call for Projects, Faisal Ahmed
1500 Close


RCPCH has approved this activity for CPD in accordance with the current RCPCH CPD Guidelines.

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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