hrp0082p2-d2-581 | Sex Development (1) | ESPE2014

Rare Disease Registries: Perception of Parents and Young People

Jayasena Arundathi , Muscarella Miriam , Ahmed Faisal

Background: Rare-disease registries are considered to be the key for improving patient care through research and audit. In the field of paediatric endocrinology, the views of parents and affected young people about such registries are unclear.Objective: To conduct a survey to understand the views of parents and young people with rare conditions.Method: A structured questionnaire was completed by two groups of clinic attendees, thos...

hrp0086p1-p341 | Gonads & DSD P1 | ESPE2016

Application of on Line Learning in Assessment of Competencies of Fellows Pediatric Endocrinology

Kranenburg Laura , Reerds Sam , Cools Martine , Muscarella Miriam , Grijpink Kalinka , Quigley Charmian , Drop Stenvert

Background: The European Society for Paediatric Endocrinology (ESPE) developed an interactive e-learning portal for pre-and postdoctoral training: (www.espe-elearning.org).Objective and hypotheses: The aim of the study was to evaluate the role of e-learning in the formative assessment of competencies (medical expert, communicator) of fellows in pediatric endocrinology in informing patients and parents with a di...