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 anawareness 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. Ofthe 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 awarenessfor 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.
27 - 29 Sep 2018
European Society for Paediatric Endocrinology