Incidence and prevalence of growth hormone deficiency in the russian federation according to the official medical statistics data and the growth hormone deficiency patients registry

Background. Growth hormone (GH) therapy for growth hormone deficient (GHD) children in Russia is funded by the state. This warrants the need for a full understanding of the disease and its treatment with recombinant GH (rGH) including its clinical, epidemiological and economical aspects. 

Aims — to estimate the incidence and the prevalence of GHD in children and adults in the Russian Federation.

Material and methods. In Russia, GHD patients are registered in both the official medical statistics (MS) and a special registry for patients suffering of «high expenditure dieseases». Both the official MS data and the GHD patients’ registry is used for analysis.

Results. According to MS the prevalence of GHD in Russia among children is 14,38 per 100 000. Including the adult population and adult patients with GHD, the prevalence is calculated at 4,94 per 100 000 total population. Calculations based on the registry show similar, yet not identical results: 14,57 per 100 000 children and 4,56 per 100 000 total population. The incidence of GHD among children results at 2,45 per 100 000 children/year according to MS, according to the registry — 2,06 per 100 000 children/year. Several regions of Russia demonstrate an extremely high or low prevalence/incidence of GHD among children. The prevalence of GHD among adults is much lower (statistics — 2,68 per 100 000 adults, registry — 2,16 per 100 000 adults). These circumstances warrant closer investigations and possible corrections of both diagnostics of GHD and patient monitoring.

Conclusions. The differences between the MS and the registry revealed here show the necessity for correcting the rules of conducting the registry. Today there are no clear exclusion criteria. Considering the epidemiology of GHD shown by the official MS, the dependence of GH therapy outcome on a timely diagnosis we suggest to widen the functional use of the federal registry, which has the potential to become a useful tool in GH therapy control and patient monitoring.

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