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
Programme
| 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 |
| 1000 | The 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 |
CPD
RCPCH has approved this activity for CPD in accordance with the current RCPCH CPD Guidelines.
Please complete the Feedback Survey to obtain a CPD attendance certificate
https://www.surveymonkey.co.uk/r/3T2ZVDZ
This workshop is generously supported by the Office for Rare Conditions, Glasgow, the University of Glasgow and an unrestricted education grant from Novo Nordisk.
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