Endocrine Abstracts

Adrenal insufficiency is a rare adrenal disorder that can be made more complicated by an adrenal crisis even to a life-threatening situation. An adrenal crisis occurs when the body has a shortage of the hormone cortisol. If the patient does not receive the correct treatment an adrenal crisis can be fatal. This can be avoided by correctly and carefully following the ‘stress instructions’ (also known as ‘sick day rules’). A significant percentage of patients ...

In 2015 AdrenalNET organized a roundtable conference with patient representatives, prescribers and pharmaceutical industry. The cause of this meeting was complaints of patients about the problematic hydrocortisone market in the Netherlands, characterized by frequent availability issues (shortage ) of the hydrocortison tablets/capsules and frequent changes in manufacturers (compounding companies) leading to quality issues. All parties at the roundtable meeting agreed to join fo...

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 le...