AcroBel – the Belgian registry on acromegaly: a survey of the ‘real-life’ outcome in 418 acromegalic subjects

• Published in: European journal of endocrinology Vol. 157; no. 4; pp. 399 - 409
• Main Authors: Bex, Marie, Abs, Roger, T’Sjoen, Guy, Mockel, Jean, Velkeniers, Brigitte, Muermans, Katja, Maiter, Dominique
• Format: Journal Article
• Language: English
• Published: Colchester European Society of Endocrinology 01.10.2007; Portland Press
• Subjects: Acromegaly - complications; Acromegaly - epidemiology; Acromegaly - mortality; Acromegaly - therapy; Adolescent; Adult; Aged; Aged, 80 and over; Arthropathy, Neurogenic - epidemiology; Belgium - epidemiology; Biological and medical sciences; Child; Clinical Studies; Comorbidity; Cross-Sectional Studies; Databases, Factual; Diabetes Complications - epidemiology; Endocrinopathies; Female; Fundamental and applied biological sciences. Psychology; Health Care Surveys; Humans; Hypertension - epidemiology; Hypothalamus. Hypophysis. Epiphysis (diseases); Luxembourg - epidemiology; Male; Medical sciences; Middle Aged; Non tumoral diseases. Target tissue resistance. Benign neoplasms; Outcome Assessment (Health Care); Quality of Health Care; Registries; Vertebrates: endocrinology; Belgium; Europe; Luxembourg; Endocrinopathy; Human; Survey; Prognosis; Surveillance; Register; Pituitary diseases; Diseases of the osteoarticular system; Acromegaly; Evolution; Endocrinology
• ISSN: 0804-4643; 1479-683X; 1479-683X
• DOI: 10.1530/EJE-07-0358

Objectives: To constitute a registry on acromegaly, AcroBel, to evaluate the epidemiology and quality of care of acromegaly in Belgium and Luxembourg. Design: A nationwide survey from June 2003 till September 2004 aiming to collect data from all patients with acromegaly who had visited the participating endocrine clinics after 1 January 2000. Methods: Retrospective data collection coupled to a visit within the survey period, allowing sampling of metabolic parameters and centralised determination of GH and IGF-I. Results: Four hundred and eighteen patients (51% men) were included, of which 96 were new cases, giving a mean incidence of 1.9 cases per million (c.p.m.) per year. The global prevalence was 41 c.p.m. but varied between 21 and 61 among different areas. Twenty-eight deaths were reported at a median age of 68 years in men and 74 years in women. The standardised mortality rate was significantly increased only in irradiated patients (2.70; confidence interval 1.60–4.55). Central measurements were available in 316 (75%) patients. Mean GH was ≤ 2 μg/l in 65% and IGF-I was normal for age in 56%, while both criteria were fulfilled in 49%. Multimodal treatment was more effective than primary medical therapy, since 56.5% were controlled versus 24.3% (P < 0.0001). Conclusions: AcroBel provides an excellent tool to analyse the prevalence, incidence, treatment modalities and outcome of acromegaly in Belgium. This real-life survey reveals that only half of acromegalic patients received an adequate therapy resulting in cure or disease control when stringent biochemical criteria are used.