Rare Disease

A European Society of Endocrinology audit and multi-country comparison of Adult Growth Hormone Deficiency (AGHD) treatment in clinical practice in Europe, Australia and New Zealand; how closely are protocols and best practice recommendations followed

European Society of Endocrinology
ESE will carry out a systematic audit on every-day, real practice of Adult Growth Hormone Deficiency (AGHD) patient diagnosis and treatment from over 50 countries and multiple HCP regionally, to compare and contrast differing practices across pan-European, Australian and New Zealand Health Care Professionals (HCP).
The exact prevalence of AGHD is not known, but estimates vary between 200-300 patients/M approximately 100,000 across Europe and is characterized by a reduction in bone mineral density, lean body mass, exercise capacity, and overall quality of life as well as an increase of body fat and cardiovascular risks. Evidence is nowadays overwhelming that most patients benefit from a daily injection of GH and are willing to continue treatment chronically, if they are severely GH-deficient and symptomatic at baseline1,2.  
We will request a targeted population of practicing endocrinologists to complete a questionnaire to establish the pan-European baseline of diagnosis and treatment practice across the region, as well as identifying any country-by-country variances compared to standard recommendations 3-6. Our methodology sets out to collect aggregated patient data that represents between 5,000 and 10,000 diagnosed patients, with treated, as well as untreated AGHD, so we can identify gaps and opportunities for improvement to optimizing outcomes for these patients.
The outcome of this audit, which will enable ESE in tailoring education on the topic, will be submitted as an abstract to ECE 2020 and as a full manuscript for publication in EJE in summer 2020.
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Approval Date:
September 2017
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In Progress
Improving the Identification and Management of Adult Growth Hormone Deficiency (AGHD)