Endocrine Abstracts

Background: Women with congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency have a poor Quality of Life (QoL) compared to the general population and are less satisfied with their body appearance. Data indicates that psychosocial determinants such as good professional and general support could be associated with an improved QoL. Since there is only little data available that has been deduced from samples of small size this effect should be further examined....

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...

In foetuses at risk of virilising CAH, prenatal treatment can be offered by administration of dexamethasone (DEX) via the mother in order to prevent genital malformations. Accumulating evidence from animal studies and epidemiological data raise concerns regarding the long term consequences of excess glucocorticoids on the developing foetus. The European study PREDEX is organized as an open, controlled, non-randomised, multicentre trial. The impact of DEX on the general well-be...

Background: From 1999 to the end of June 2005, 186 patients (26 men) with truly asymptomatic pHPT based on the NIH 1990 criteria were included at 11 centres in Scandinavia. The mean age at inclusion was 63.2±7.8 (S.D.) years. After informed consent the patients were randomised to operation (93) or medical observation (94), in order to investigate the effect of operation on Quality of Life and co-morbidity. At present, 159 patients are ongoing, 3 dead, and 2...