Acromegaly Registry

Our knowledge is deficient in the etiology, symptoms and prevalence of acromegaly. For those affected, not only the risk of tumor complication is increased, but the likelihood of different cardiac abnormalities is also higher. The purpose of the registry is to obtain prospective data collection from newly diagnosed acromegaly patients in order to clarify the pathogenesis and course of the disease. By analyzing the clinical data, symptoms, co-morbidities, detailed, reliable data can be obtained. Prospective data collection is aimed at investigating the so-called predictive factors affecting the epidemiology of the disease, the course of the disease and the response to the therapy. Along with the course of the disease, we want to follow the different therapeutic methods used in the illness and any radiotherapy or surgical interventions that may be necessary.

Our aims:

1. To find and assess the occurrence, characteristics and symptoms of acromegaly in Hungarian society.

2. We want to investigate the predictive power of some of the symptoms and laboratory parameters.

3. What kind of prognostic factors characterize the disease?

4. Which treatment strategies are the most effective for survival and which ones improve the quality of life.

5. Detailed mapping and change of pain management, with pain questionnaires.

6. Secondary goal is to make the registry national and international.

The registry does not require extra investigation in addition to the procedures and interventions.