Endocrine Abstracts

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

Objective: To assess the epidemiological and clinical characteristics of acromegaly in Russia according to Russian hypothalamic and pituitary tumor registry

Material and methods: Database of the Russian hypothalamic and pituitary tumor registry, which includes data from 84 regions of the country, was used for the study. Date of analysis – 01-Sep-2022.

Results: Currently there are 5054 patients with acromegaly in the registry. Prevalence per 100 000 inhabitants is highest in Kirov region (9.82), Karelia republic (9.48) and Vladimirskaya region (7.11). Annual incidence per 1 mil was 0.6 cases in 2021. Male to female ratio 1425(28.2%):3629(71.8%), median age 46.2 years [33.1;52.7], age at diagnosis 46.2 years [33.1;52.7]. During the last visit, remission was recorded in 1671 patients (42.7%). Pituitary tumor size was available in 2131 patients: macroadenomas in majority of cases (1562 patients, 73.3%). Median IGF1 levels in patients with active disease was 378.0 ng/ml [245.9;620.0], basal GH 4.0 ng/ml [1.6;12.0]. Most prevalent complications were hypertension (47.8%), nodular goiter (31.6%), carbohydrate metabolism disorders (26.5%), obstructive sleep apnea (14.4%) and menstrual irregularity (12.1%). Interestingly, prevalence of joint diseases and colon polyps was quite low – 6.3% and 0.24%, respectively. Among all treated patients, 42.5% underwent neurosurgery, 13.9% – pituitary radiotherapy. Medical therapy, either monotherapy and combination, is registered in 42.3% of patients (n=2140): octreotide (75.3%), lanreotide (18.6%), pegvisomant (2.6%), cabergoline (18.7%) and bromocriptine (3.9%). Overall number of registered deaths in patients with acromegaly was 370 cases: 20 due to pituitary adenoma, 73 cardiovascular causes, 36 malignancies, 64 other causes and in 137 the cause was not specified.

Conclusions: Russian Hypothalamic and Pituitary Tumor Registry is a viable instrument for the assessment of epidemiological and clinical data, reflecting the implications of treatment strategies in real life practice. Median age of diagnosis in our study is similar to the literature data, however, other studies do not report female predominance, as seen in our cohort. Complication rates are mostly similar, however, extremely low prevalence of colon neoplasms and joint diseases shows that more effort should be put in the screening of these comorbidities. Remission rates and availability of neurosurgery are also lower than overall literature data, which shows the need for optimization in treatment strategies, as well as increase in data quality and registration.