What is the
IF GLOBAL PREVENTION INITIATIVE
When? On 28th October 2016 ! The International Federation for Spina Bifida and Hydrocephalus (IFSBH) launched the world’s first global prevention initiative aiming to tackle the primary prevention of neural tube defects (NTDs) and hydrocephalus as a united global community
The Goal To unite all relevant organisations, NGOs, Governments, policy makers, health services, health professionals and individuals around the world to maximize the risk reduction of NTDs and hydrocephalus. Together, we can help to: • reduce the number of pregnancies affected by NTDs • reduce the number of cases of infectious hydrocephalus • improve general birth outcomes • promote new research to further reduce the risk of these conditions
The Need • NTDs affect over 300,000 live births per year, ! with many thousands more pregnancies affected ! that don’t reach term • The exact number of individuals affected by Hydrocephalus is much greater, but still unknown
Prevention - where do we start? Neural Tube Defects
Hydrocephalus
• In 1991 it was discovered that folic acid could help to reduce the risk of NTDs by up to 72% • NTDs are multi-factorial conditions and there are many other possible risk factors, including family history, diabetes, coeliac disease and obesity • Not all NTDs are preventable by folic acid, but it’s a great place to start
• Further research is essential if we are to increase the potential for hydrocephalus prevention • There are different types and causes of hydrocephalus • Hydrocephalus can occur alongside spina bifida or as an independent condition • Reducing the risk of NTDs, certain infections and prematurity is our starting point
Preventing NTDs
Supplementation
Fortification
Health Education
Timely, daily supplementation with the recommended dose of folic acid has been proven to reduce the risk of NTDs by up to 72%
In countries where staple foods (such as bread, rice and maize flour) have been fortified with folic acid, the risk of NTD has been reduced by an average of 40-50%
Health education is key to maximizing NTD prevention. Women with lower levels of education and socio-economic status are shown to be among those at greatest risk
Folic acid preventable NTDs • NTDs occur in the first 28 days of pregnancy before many women even realise that they are pregnant • For folic acid to be effective in preventing NTDs, women need to have sufficient intakes of folic acid before the conceive • In many countries up to 50% of pregnancies are unplanned • Many women are therefore unable to ensure adequate folate levels before the conceive • Once a woman is aware that she is pregnant it is too late for folic acid to be effective • Supplementation, fortification and education are all key to maximizing prevention of folic acid preventable NTDs
Latest estimates suggest that we are currently only preventing around 15% of all folic acid preventable NTDs, so there’s lots more work to do
Preventing hydrocephalus
With NTD
Infectious
Premature Birth
Up to 90% of babies affected by spina bifida will also develop hydrocephalus (fluid on the brain). So, by reducing the risk of NTD we will also reduce the risk of associated hydrocephalus
Infections occurring shortly after birth/during childhood (i.e. meningitis) are known to be risk factors for NTD. By reducing the risks associated with these infections we hope to reduce the risk of hydrocephalus
Premature birth is known to increase the risk of hydrocephalus. By reducing the risk factors associated with premature birth, we can help to reduce the risk of cases of associated hydrocephalus
There is currently no data on hydrocephalus prevention. More action and research is clearly needed to address this serious global health issue
Working together we can change this! But we cannot do it alone..
What can YOU do to help? • Sign up as a supporter of the Global Prevention Initiative (it’s free and quick to do and will make a world of difference!) www.ifglobal.org/prevention • Join in our social media activity, share news/success stories and become part of the GPI global community • Integrate prevention messages into your existing work • Contact IF for support in starting up prevention activity in your region/country (martine.austin@ifglobal.org)
Every voice counts! Your voice counts! The GPI NEEDS YOU! • Sign up • Share information • Retweet • Use the hashtag #IFSBHGPI • Comment and become part of the conversation • Let us know if you can help with, or need materials translated • Use our knowledge network to improve prevention efforts in your own country/region
Thank you for your support. We’ll keep you updated on our progress!