AcroBel--the Belgian registry on acromegaly: a survey of the 'real-life' outcome in 418 acromegalic subjects.
OBJECTIVE
To constitute a registry on acromegaly, AcroBel, to evaluate the epidemiology and quality of care of acromegaly in Belgium and Luxembourg.


METHODS
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 < or = 2 microg/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.
Bex
Marie
M
Department of Endocrinology, University Hospital Leuven, Leuven, Belgium. marie.bex@uz.kuleuven.ac.be
Abs
Roger
R
T'Sjoen
Guy
G
Mockel
Jean
J
Velkeniers
Brigitte
B
Muermans
Katja
K
Maiter
Dominique
D
D000172:Acromegaly / Q000150:complications / Q000453:epidemiology* / Q000401:mortality / Q000628:therapy; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001177:Arthropathy, Neurogenic / Q000453:epidemiology; D001530:Belgium / Q000453:epidemiology; D002648:Child; D015897:Comorbidity; D003430:Cross-Sectional Studies; D016208:Databases, Factual; D048909:Diabetes Complications / Q000453:epidemiology; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D006973:Hypertension / Q000453:epidemiology; D008189:Luxembourg / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D011787:Quality of Health Care; D012042:Registries