Background: GH therapy for GH deficient (GHD) children in Russia is fully state funded as part of the Seven high expenditure diseases (7HED) federal program. Thus, it is important to thoroughly understand the disorder, including its epidemiology. In Russia, there are two parallel functioning registries: the official federal medical statistics (OFMS) which provides purely statistical information and the 7HED registry which must contain a patients data to make free treatment accessible.
Aim: To determine the prevalence and incidence of GHD in children and adults in Russia.
Materials and methods: Statistical data analyzed: the OFMS and the 7HED registries for the year 2015, the official federal statistics of Russian population (age and gender) for the year 2015. Both medical registries collect data from the whole of the country.
Results: According to OFMS the prevalence of GHD among children is 1:6950. Prevalence of GHD in adults was shown to be 1:37 300. The prevalence of GHD in the whole population is estimated at 1:20 200 people. The 7HED registry shows similar, yet slightly different results: 1:6860 children (difference of 1.2%), 1:46 300 adults (19.4%) and 1:21 900 people (7.7%) in the whole population. According to the 7HED registry out of the 4132 children registered, 1173 were girls and 2959 were boys, which means a girls:boys ratio 1:2,52. The OFMS registry showed a child (age 014) to teen (age 1517) ratio of 1:1,57. The incidence of GHD for children varies between 1:40 800 children per year (OFMS) and 1:48 500 children per year (7HED). In several regions of Russia, the prevalence/incidence of GHD among children turned out to be unusually high (1:1155 in total and 1:7867 per year) or low (1:30 490 in total and no new cases at all in 2015) in comparison to the average. These discrepancies, including the differences between the OFMS and the 7HED registries call for a clinical and organizational audit.
Conclusion: Considering how dependent GH therapy outcome is on a timely diagnosis our suggestion was to widen the functional ability of the 7HED registry by adding clinical data, which would allow for a transformation of the registry into a fully functional tool for GHD patients monitoring and therapy quality control.
27 - 29 Sep 2018
European Society for Paediatric Endocrinology