Endocrine Abstracts

Introduction: An aim of the ERNs is empowering patients, by education & learning about their experiences after diagnosis of a rare endocrine disease (RED), to identify gaps and improve outcome. Thus, EndoERN Work Package 4 designed a survey, to learn about patients perceptions on quality of care and existing gaps in diagnosis/management.Aim: Evaluate results of a 21 question survey answered on-line on a Likert scale by individual patients with RED or...

Introduction: The European Registries for Rare Endocrine Conditions (EuRRECa) was created in collaboration with the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the European Society for Paediatric Endocrinology and the European Society of Endocrinology to support the needs of the endocrine community. The Core Registry, one of its platforms, enables the collection of longitudinal patient and clinician reported outcomes. A module collecting aspects of the ...