Belaya Zhanna E, Golounina Olga O, Rozhinskaya Liudmila Y, Melnichenko Galina A, Isakov Michail А, Lutsenko Alexander S, Alekseeva Tatiana, Zenkova Tatiana S, Przhiyalkovskaya Elena G, Panyushkina Galina M, Ilukhina Olga B, Ivanova Elena I, Krishtal Ekaterina A, Vachygova Alla A, Pigarova Ekaterina A, Dzeranova Larisa K, Marova Evgenia I, Arapova Svetlana D, Mamedova Elizaveta O, Grebennikova Tatiana A, Antsiferov Mikhail B, Dreval Alexander V, Dedov Ivan I
Endocrinology Research Centre.
I.M. Sechenov First Moscow State Medical University of the Ministry of Health of the Russian Federation (Sechenov University).
Probl Endokrinol (Mosk). 2020 Aug 4;66(1):93-103. doi: 10.14341/probl10333.
The registry is the main source of information about patients with acromegaly for assessing the quality of medical care, effectiveness of treatment, determining the compliance of real clinical practice with existing standards and patient management protocols.
To evaluate epidemiological, demographic and clinical characteristics of acromegaly in Russian Federation and effectiveness of treatment modalities.
The object of the study was the database of the united Russian registry of patients with pituitary tumors with specific analysis of patients with acromegaly only. We analyzed the data of 4114 patients with acromegaly stored on the online system in February 2019.
Based on the data 32% of patients had complete clinical and laboratory remission of acromegaly; the percentage of patients with no remission was 68%, among them 22.5% had significant improvements in clinical symptoms and a decrease in growth hormone (GH) and insulin-like growth factor-1 (IGF-1) without IGF-1 normalization. The average age of patients at the onset of the disease was 42.7 years and at diagnosis – 45.8 years. The ratio of men to women was 1:2.6. In patients with acromegaly hypopituitarism was registered in 14.7% of cases and among them hypothyroidism (66%) and hypogonadism (52%) were registered more often. Among other complications the leading were diabetes mellitus (15.7%) and acromegalic arthropathy (15%). The proportion of patients receiving neurosurgical treatment increased from 35.7% to 49.6% in 2012–2019; the portion of patients undergoing radiation therapy decreased significantly from 17.7% in 2012 to 0.8% in 2019. Remission was achieved in 40.47% after neurosurgery and 28.95% after medical treatment as a first line therapy p<0.01. The number of patients receiving medical treatment at the time of the study was 1209. Among them 51% of patients treated with long-acting lanreotide and 24% receiving long-acting octreotide achieved remission (p<0.0001) CONCLUSIONS: The remission rate of acromegaly remains suboptimal despite increased surgical activity, which corresponds to global trends. Long-acting lanreotide was significantly superior versus long-acting octreotide in the rate of acromegaly remission, which does not correspond with clinical trials.
该登记处是有关肢端肥大症患者信息的主要来源，用于评估医疗质量、治疗效果，确定实际临床实践与现有标准及患者管理方案的符合程度。
评估俄罗斯联邦肢端肥大症的流行病学、人口统计学和临床特征以及治疗方式的效果。
研究对象是俄罗斯垂体肿瘤患者联合登记处的数据库，仅对肢端肥大症患者进行了具体分析。我们分析了2019年2月存储在在线系统中的4114例肢端肥大症患者的数据。
根据数据，32%的患者实现了肢端肥大症的完全临床和实验室缓解；未缓解的患者比例为68%，其中22.5%的患者临床症状有显著改善，生长激素（GH）和胰岛素样生长因子-1（IGF-1）下降，但IGF-1未恢复正常。患者发病时的平均年龄为42.7岁，诊断时为45.8岁。男女比例为1:2.6。肢端肥大症患者中14.7%出现垂体功能减退，其中甲状腺功能减退（66%）和性腺功能减退（52%）更为常见。在其他并发症中，主要的是糖尿病（15.7%）和肢端肥大症关节病（15%）。2012 - 2019年接受神经外科治疗的患者比例从35.7%增至49.6%；接受放射治疗的患者比例从2012年的17.7%显著降至2019年的0.8%。神经外科手术后缓解率为40.47%，一线药物治疗后缓解率为28.95%，p<0.01。研究时接受药物治疗的患者有1209例。其中，接受长效兰瑞肽治疗的患者中有51%实现缓解，接受长效奥曲肽治疗的患者中有24%实现缓解（p<0.0001）
尽管手术活动增加，但肢端肥大症的缓解率仍不理想，这与全球趋势相符。长效兰瑞肽在肢端肥大症缓解率方面明显优于长效奥曲肽，这与临床试验结果不符。
