[Primary hyperparathyroidism in Russia according to the registry]

Area of Science:

• Endocrinology
• Epidemiology
• Genetics

Background:

• Primary hyperparathyroidism (PHPT) lacks large-scale epidemiological data in Russia.
• High disease prevalence, disability, and mortality necessitate understanding PHPT's epidemiology and clinical structure.
• Determining the extent of medical care required for PHPT patients is crucial.

Purpose of the Study:

• To evaluate the frequency of PHPT detection in Russia.
• To characterize the clinical forms of PHPT within the Russian Federation.
• To utilize an online registry for comprehensive data collection.

Main Methods:

• Analysis of the State Register of Patients with PHPT, including 1914 patients from 71 regions.
• Evaluation of demographic, clinical, and phosphorus-calcium metabolism indicators.
• Assessment of PHPT forms, hereditary syndromes, and parathyroid carcinoma.

Main Results:

• PHPT identified in 0.001% of the Russian population (1914 cases).
• Symptomatic PHPT observed in 67.1% of active cases, with bone complications in 48.4%.
• Sporadic PHPT accounted for 83% of cases; hereditary forms and parathyroid carcinoma were also noted.

Conclusions:

• PHPT detection in Russia has increased due to active patient registration.
• Modifying registration and control principles is essential for managing PHPT care.
• Developing a robust information platform is needed to calculate medical care volumes for PHPT patients.