Important update on Russian project activities:
It is with deep regret that Child Health International has had to temporarily suspend communications with our colleagues in Russia. Whilst we remain an apolitical charity, focussed on improving the lives of children and young adults living with cystic fibrosis (CF) regardless of where they live, the current invasion of Ukraine has made it impossible to safely continue our work in the region.
For further information please see our statement on the Ukraine emergency, available here, or read on to learn about our previous work with the Russian CF community.
There are currently 3200 registered cases of cystic fibrosis in Russia, compared to approximately 10,600 in the UK. This translates to a density of 1 case per 23 km2 in the UK compared to almost 1 in 5000 km2in Russia. This geographic sparsity creates significant challenges to the adequate provision of multidisciplinary care, especially in more rural regions.
There are currently only 40 regional CF centres outwith Moscow and St Petersburg, covering an area of almost 70 times the size of the UK.
Whilst cystic fibrosis care in Moscow and St Petersburg is generally of a good standard, the geographic sparsity of specialist centres creates significant challenges to the adequate provision of multidisciplinary care across rural regions.
Life expectancy for a child born with cysitic fibrosis in Russia doubled during the first three years of Child Health International’s involvement
Key issues identified include the following:
- A lack of diagnostic skills at the primary care level in rural regions (compensated to a degree by the advent of neonatal screening).
- A significant lack of specialist physiotherapists.
- A limited number of specialist dieticians and psychologists.
- At the adult level, additional training is required for doctors, specialising in endocrinology, gynaecology and psychology.
Child Health International’s work in Russia
Child Health International have been working in Russia since 1993 when Dr Chris Rolles started a 3-year collaborative project between Moscow cystic fibrosis centre and Southampton. Close working relationships formed during this intial 3-year period have enabled ongoing communication between UK and Russian teams, with activities including conference attendence, specialist training and work shadowing and ad hoc information sharing.
Download our full project summary by clicking on the link below.
Find out more about the structure of Russian cystic fibrosis organisations below.