Endocrine Abstracts

Since my son was born (32 years ago) the monitoring and treatment for patients with CAH has improved considerable, with multidisciplinary teams providing excellent care from birth. It is still pretty scary for parents when they are given the diagnosis but they are able to access information on the condition, not just from their hospital team but also via support groups and the internet. Social media has enabled them to chat to other families online which can help them feel les...

Background: The Congenital adrenal Hyperplasia (CAH) Adult Study Executive (CaHASE) identified poor metabolic outcomes and reduced quality of life in CAH. CaHASE2 was recently established to examine the current status of CAH care. We surveyed clinical practice in the UK and Ireland, and awareness and use of the International CAH (I-CAH) Registry.Methods: We undertook an anonymised online survey targeting clinicians provi...

Aim: To quantify difference in service provision for children and young people (CYP) living with CAH across the UK.Methods: A national service evaluation using online questionnaires circulated to patients and clinicians from secondary and tertiary UK centres managing CYP with CAH, and via the ‘Living with CAH’ support group mailing list.Results: Total of 195 responses rel...