Twelve years of the Spanish acromegaly registry: a historical view of acromegaly management in Spain.

Acromegaly is a rare disease with an estimated incidence of 2.5 cases per million (cpm) per year according to Spanish national data. In 1997 the Spanish Acromegaly Registry (Registro Español de Acromegalia [REA]) was set up. The main objective of the project was to collect epidemiological, clinical and biochemical data, as well as data on treatments and outcomes of acromegaly in Spain. Data entry was prospective and retrospective. Peak data entry was recorded between 1998 and 1999, and declined thereafter. In 2004 data were analyzed and the results were published in the European Journal of Endocrinology. Twelve years after the database was set up, the neuroendocrine group of the Spanish Society of Endocrinology and Nutrition (Sociedad Española de Endocrinologı́a y Nutrición [SEEN]) urged for new data entry, updating of previous patients and new data analysis. The main aim of the project is to define trends in acromegaly treatment and outcomes in Spain. We also aim to provide mortality data