Endocrine Abstracts

Background

Pituitary disease registries are major instruments of epidemiological and clinical data collection used worldwide.

Objective

To assess the data of pituitary tumor registry in Russia.

Material and methods

Patient records, retrieved from online platform of the Registry.

Results

Currently there are 9858 patients registered in Russian Hypothalamic and Pituitary Tumor Registry (OGGO): 4792 (49%) with acromegaly (AM), 2449 (25%) with prolactinoma (PRL), 870 (9%) with Cushing’s disease (CD), 1155 (12%) with non-functioning adenomas (NFPA), 420 (4%) with other tumors of pituitary region and 172 (2%) with rare pituitary adenomas. Mean age of disease onset is 43.3 years for AM, 34.4 for PRL, 34.0 for CD, 43.5 for NFPA. Estimated diagnostic delays in patients with AM was 2.1 years, 3.3 years for CD, 1.5 years for PRL, 1.2 years for NFPA. Median age for AM is 64.0 years [53;71] (72% female), 49.0 [39;61] for CD (84% female), 47.0 [38.0;60.0] for PRL (80% female), 58.0 [44.0;68.0] for NFPA (72% female). Adenoma size was available in 2031 acromegaly patient records (1567 macroadenomas), 266 patients with CD (106 macroadenomas), 830 patients with PRL (442 macroadenomas), 468 patients with NFPA (253 macroadenomas). Neurosurgical treatment was performed in 2082 patients with AM (54.0%), 292 patients with PRL (12.0%), 593 patients with CD (68.6%) and 289 patients with NFPA (25.4%). Radiotherapy was used in 714 cases of AM (15.4%), 47 PRL (1.9%), 188 CD (21.5%), 28 NFPA (2.4%). 106 patients with CD (12.3%) underwent bilateral adrenalectomy. Concerning medical treatment of patients with acromegaly (1705 patient records), somatostatin analogues were used in 1557 cases (91.3%), dopamine agonists – in 414 cases (24.3%), GH receptor antagonists – in 7 cases (0.2%). Patients with prolactinomas (870 patient records) were treated with dopamine agonists in 865 cases (99.5%). 7 patients were additionally treated with octreotide. Patients with CD received ketoconazole in 60 cases (66.7%), in 39 patients (43.3%) – dopamine agonists, 6 patients (6.7%) – somatostatin analogues. Medical therapy was used in 83 cases of NFPA: dopamine agonists were used in 77 patients (92.8%), somatostatin analogues – in 6 patients (7.2%).

Conclusions

Russian Hypothalamic and Pituitary Tumor Registry is an important tool for assessment of epidemiological data and has promising capabilities for the analysis of clinical characteristics. However, there is a lack of sufficient up-to-date information on medication treatment in patient records, which suggests that better monitoring is needed to achieve data continuity and integrity.