Endocrine Abstracts (2013) 32 S21.2 | DOI: 10.1530/endoabs.32.S21.2

Lessons from the Liege Acromegaly Survey (LAS)

Patrick Petrossians1, Sabina Zacharieva2, Philippe Chanson3, Sebastian Neggers4, Thierry Brue5, Annamaria Colao6, Anna-Lena Hulting7, Brigitte Delemer8, Vaclav Hana9, Gunter Stalla10, Francesco Minuto11, Marie-Lise Jaffrain-Réa12, Davide Carvalho13, Carmen Fajardo Montañana14 & Albert Beckers1

1CHU de Liege, Liege, Belgium; 2Department of Pituitary and Adrenal Diseases, Medical University of Sofia, Sofia, Bulgaria; 3CHU de Bicêtre, Paris, France; 4Department of Internal Medicine, Erasmus University, Rotterdam, The Netherlands; 5CHU Timone, Marseilles, France; 6Department of Clinical and Molecular Endocrinology and Oncology, University ‘Federico II’, Naples, Italy; 7Karolinska Institutet, Stockholm, Sweden; 8CHU de Reims, Reim, France; 9Charles University, Prague, Czech Republic; 10Max Planck Institute, Munich, Germany; 11Endocrinology Unit, University of Genova, Genova, Italy; 12Department of Experimental Medicine, University of L’Aquila, L’Aquila, Italy; 13Centro Hospitalar São João, Porto, Portugal; 14Hospital Universitario de La Ribera, Valenci, Spain.

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.