The low incidence of acromegaly makes it difficult for any individual centre to gather prospective data on a large enough series of patients to enable satisfactory epidemiological and other research to take place. In 1998, eight centres agreed to set up a collaborative database with a view to accumulating a major series covering the main treatment centres. The project has now been active for several years and there are currently seventeen participating centres. Any centre that is involved in the management of patients with acromegaly can participate. Initially it was decided to focus on centres with 40+ patients. The aims of the database are: to gather prospective data, to use this data to look at long-term morbidity and mortality, to provide data on the results of surgery, radiotherapy and medical therapy, to disseminate this information at conferences and in publications and to encourage centres to audit their own practices against the full dataset. As of 1st November 2002 a total of 1535 patient records have been entered by indiviual centres and transferred to the national database. This represents 74.3% of identified records. In the majority of centres data in entered by endocrine nurses. This is extremely time consuming. Three training days are held annually for data entry personnel to ensure that they are appropriately trained and supported. In addition, the National Co-ordinator is responsible for visiting each centre as required. There are a further nine centres in the process of joining the project and several others have expressed an interest. A clinical sub-committee of the Society for Endocrinology is now responsible for running the project which remains self-financing.
The project is currently supported by an educational grant from Novartis Pharmaceuticals.