ECE2013 Symposia Multi-centre pituitary studies (3 abstracts)
The Liège Acromegaly Survey is a cross-sectional study on acromegalic patients, developed as an in-house tool in Liège, then extended to other Europeans participating centers. The database differentiates itself from national and multinational registries by adopting a goal oriented approach and it was conceived following a list of open questions on acromegaly. After an initial test run in Liège, the database installation started on mid-March 2010. Thirteen other european centers joined the project. At this time, 3050 patients from fourteen centers were included.
Sex ratio (M/F) was 1397/1653 (=0.85) with strong differences between centers (Porto: 0.43, Valencia: 1.4). Median age at diagnosis was 45.1 and the male population younger than the female (medians: M=43.4, F=46.2, P<0.001). When looking at patients age and the year of diagnosis, a trend toward an aging of the population was observed with more older patients getting diagnosed with time.
Median duration of disease before diagnosis was 5 years whenever estimation was possible. Acromegaly was suspected in 43% of cases by endocrinologists, in 16% of cases by an internist from different specialities and in 17% of cases by family doctor. Dysmorphia appears as the main sign leading to diagnosis.
At diagnosis, glucose levels in non-diabetic patients, hemoglobin concentrations and red blood cell count correlated with IGF1 levels but not GH, suggesting that IGF1 values are a better representation of the activity of acromegaly than GH.
In summary, the LAS was conceived as a tool to answer a number of questions on the subject of acromegaly. By concentrating on these specific points and recording data from a more than 3000 patients, this database seems to be able to highlight a number of aspects not addressed before.