ECE2018 Poster Presentations: Interdisciplinary Endocrinology Paediatric endocrinology (3 abstracts)
Background: Registries are of key importance for a centre of expertise. Endo-ERN consists of 71 reference centres (RCs) that cover several groups of rare endocrine conditions within 8 themes (www.endo-ern.eu). It is unclear if awareness, participation and availability of registries is uniform for all conditions within Endo-ERN.
Objective: To determine the extent of engagement in registries of Endo-ERN members.
Methods: Endo-ERN RC leads were invited to participate in a survey of their awareness and participation in local, national and international registries and their views on future priorities using a Likert scale of 15 where 5 was the greatest priority.
Results: A RC response rate of 82% was obtained. Of the 29 centres surveyed within the glucose theme, 62% reported an awareness of an international registry for rare diabetes with a 48% participation rate. A priority score of 5 was only attributed to rare diabetes. Of the 33 centres within the adrenal theme, awareness of an international registry was 61% for adrenocortical tumours (ACT) and participation was 39%. Pheochromocytoma, ACT and CAH were rated as 5. Of the 37 centres within the sex development theme, 50% reported awareness and participation was 37% for DSD; all conditions were rated as 5. Of the 43 centres within the pituitary theme, international registry awareness was 33% for pituitary adenoma whilst participation was 23%. Pituitary adenoma was the only condition rated as 5. Of the 31 centres within the rare genetic tumour theme, 19% reported an international registry awareness for MEN1 and 6% reported participation; all conditions were rated as 5. Of the 30 centres within the growth theme, international registry awareness was 17% for Prader Willi Syndrome and participation was 10%. All conditions were rated as 5. Of the 29 centres within the Calcium/Phosphate theme, international registry awareness was 14% for phosphate disorders and participation was 7%. Hypocalcaemia and hypophosphataemia were rated as 5. Of the 35 centres within the thyroid theme, international registry awareness for thyroid carcinoma was 14% and participation was 0%, with 4 of 6 conditions being rated as 5.
Conclusion: Whilst there is a clear need to develop new detailed disease registries, there is also a need to improve the awareness and signposting of existing registries. A common platform that is used by the whole endocrine community and which directs the user to high quality detailed disease registries has the potential to achieve this objective.
19 May 2018 - 22 May 2018