A pioneering resource to help tackle birth defects, particularly in low and middle income countries (LMICs), is now fully available free and online to health and policy professionals and patient groups across the globe. The PHG Foundation Health Needs Assessment Toolkit for Congenital Disorders (also known as birth defects), is a comprehensive database, information resource and roadmap to creating essential services in this neglected area. For the first time, health professionals in LMICs have access to a systematic approach to help them demonstrate the need in their regions and to make the evidence based case to build effective and equitable services to address that need.
The latest topics to be added are:
• Fetal alcohol spectrum disorder
• Congenital rubella
• Congenital syphilis
The PHG Foundation Toolkit Development Team has been working closely with pilot groups in three countries in South America – Brazil, Argentina and Uruguay – to improve the usability of the Toolkit. The latest iteration was demonstrated at the recent Brazilian Congress of Medical Genetics 2012 in Porto Alegre, Brazil.
Dr Maria Teresa Sanseverino, from the Servico de Genetica Medica Hospital de Clinicas de Porto Alegre, who was part of the Brazilan pilot and is continuing to use the Toolkit to develop preconception services in Porto Alegre, said at the conference “I do not think people realise the huge impact the Tookit is having in Brazil. Already it is going long way to bring about improvements in services for the care and prevention of birth defects.”
The PHG Foundation is now working to extend adoption of this innovative resource to other countries. The Foundation has recently been awarded UKIERI funding to work with Dr Anita Kar, Director at the Interdisciplinary School of Health Sciences at the University of Pune, India. Using the Toolkit, they plan to carry out a health needs assessment for birth defects in an urban population in Maharashtra state.
Dr Kar said “With the Toolkit, data regarding India has been brought together to show the enormous, but largely invisible problem of birth defects. Every year, thousands of children are born in India with birth defects. The Toolkit is helping us get to the heart of how to review existing services and prioritise the implementation of new services in order to improve population health in the region.”