Research & Science
This work package functions downstream of education, registries, communication and so on. Priority areas will be identified and existing registries and clinical trial data mapped, and these will be translated to practical projects on a realistic timeline. An important focus will be on joint initiatives of the paediatric and adult endocrine fields, following transition of patients from the former group into the latter.
The central and original feature of the network is to create a consortium of paediatric and adult specialists of rare endocrine conditions. It is recognised that the transition from childhood/adolescence to adulthood is critical and poses unanswered questions in rare conditions diagnosed in children and lasting for the entire life. This work package will aim to adress those questions.