A global roadmap to tackling birth defects at the local level

A pioneering resource to help tackle birth defects, particularly in low and middle income countries (LMICs), is now 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  need  and to make the evidence based case to build effective and equitable services relevant to the communities in their region. Throughout the first part of 2012,  we have been releasing the Toolkit topic areas updated with feedback from pilot users. In July, we released the final four of the 17 topics areas.
 
Access to the Toolkit is at www.bornhealthy.org/toolkit, where users are asked to register for this free resource.

The Toolkit was most recently presented to the recent Brazilian Congress of Medical Genetics 2012 in Porto Alegre, Brazil.

Dr Luis Nacul, who led the early development of the Toolkit, said after the conference, “The space given to the Toolkit at the conference was extraordinary and demonstrates it is very much part of the agenda in Brazil and in some neighbouring countries, with the potential of high impact growing.”

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.

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