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Endocrine Abstracts (2006) 11 P510

ECE2006 Poster Presentations Endocrine tumours and neoplasia (116 abstracts)

AcroBel: a registry and survey on acromegaly in Belgium

M Bex 1 , R Abs 2 , G T’Sjoen 3 , J Mockel 4 , B Velkeniers 5 & D Maiter 6


1UZLeuven, Leuven, Belgium; 2UZA, Antwerp, Belgium; 3UZGent, Ghent, Belgium; 4ULB Erasme, Brussels, Belgium; 5AZ VUB, Brussels, Belgium; 6UCL St. Luc, Brussels, Belgium.


To evaluate the epidemiology and global quality of care of acromegaly in Belgium, all endocrinologists treating patients with acromegaly were invited to participate in a nationwide survey extending from 15-6-2003 till 30-9-2004, aiming to include all patients (including deaths) that were in follow up or newly diagnosed after 1-1-2000. The project was ethically approved and written informed consent obtained. Retrospective data on demographics, pathology, complications and treatment were anonymously collected through Palms and stored in an Access-based database. A symptom score and the ACRO-Qol questionnaire were used to evaluate current quality of life. The level of hormonal control was determined by central measurements of serum GH, IGF-I and IGFBP-3.

The participation of 64 physicians working in 37 centres provided a ‘real life’ picture of acromegaly. Of the 419 patients (51% men) in the dataset, 80% were followed in 12 university or large regional hospitals (9–65 patients each), the care of the remaining 20% was dispersed over 25 hospitals (1–6 patients each).

There were 96 new cases of acromegaly reported, giving a global incidence of 2 cases per million inhabitants (c.p.m.) per year. The prevalence was globally 41 c.p.m. but varied between 21 and 61 c.p.m. among the different areas. Mean age at diagnosis was 42±13 y in male and 48±14 y in female patients, with a mean follow up of 12±9 y (range 0–45). Twenty-seven deaths were reported at a mean age of 65±14 y in men and 70±12 y in women. Central lab assays were available in 316 patients (75%). Mean GH was <2 μg/l in 65% of patients (excluding 11 on GH replacement therapy and 4 on pegvisomant) while 56% had an IGF-I Z-score <+2.

Conclusion: Despite the available treatment modalities (pre-pegvisomant era), less than 60% of patients with acromegaly in Belgium are cured or controlled according to currently admitted criteria.

Acknowledgement: This AcroBel survey was made possible with the generous support of Novartis Belgium.

Volume 11

8th European Congress of Endocrinology incorporating the British Endocrine Societies

European Society of Endocrinology 
British Endocrine Societies 

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