Iran Pituitary Tumor Registry: Description of the Program and Initial Results

This study was designed to present initial results on clinical presentation, therapeutic modalities, and outcome information of patients with pituitary tumors registered in Iran Pituitary Tumor Registry (IPTR).
We collected data from a web-based electronic medical records of patients with various pituitary tumors referred to four tertiary care centers in the country. Retrospective analysis was performed on demographic, clinical, and therapeutic information of 298 patients including 51 clinically nonfunctioning adenoma (CNFA), 85 acromegaly, 135 prolactinoma, and 27 Cushing’s disease (CD).
From October 2014 to July 2016, 298 people with the diagnosis of pituitary tumor were registered. Prolactinoma was the most prevalent tumor (45.3%), followed by Acromegaly (28.6%), CNFPA (17.1%), and CD (9%). Female dominance was seen among patients with prolactinoma and CD, while the majority of patients with CNFPA were male and acromegaly was equally distributed between men and women. Hypogonadal symptoms were almost always seen in all types of pituitary groups. Surgery alone was the most common therapeutic modality used in cases of acromegaly, CNFPA, and CD. However, medical therapy alone was frequently applied for cases of prolactinoma. Finally, biochemical cure was achieved in most cases of prolactinoma and CD, but only in 36.5% of acromegalics. Moreover, 80% of patients suffering from CNFPA showed no residual tumor in their imaging.
In conclusion, this comprehensive tumor registry enables early identification, selection of best therapeutic approaches, and evaluation of long-term treatment outcomes. Furthermore, this registry can be used to improve surveillance protocols.