APPROACH AND METHODOLOGY
Up to 70% of birth defects are preventable or treatable, mostly through the use of simple interventions. Better care and management can reduce deaths and the impact of disability. With growing economic pressures and competing health needs, funding will only be allocated where there is a strong evidence based case for support. The toolkit developed by the PHG Foundation is adapted from a proven 'health needs assessment' model and will enable systematic gathering of evidence of unmet health needs. It contains high quality data on the impact of birth defects in different populations, expert information on tackling them, plus information about the effectiveness and cost of interventions. The toolkit reflects the political, legal, ethical, and social issues around science and health that are relevant for different countries. In conjunction, an international community of interest will support the programme as ambassadors and advocates.
IMPLEMENTATION, TIMELINE, AND DELIVERABLES
In August of this year, an early version of the toolkit will be tested in Brazil, launching an iterative pilot process involving low / middle income countries over the next two years. The toolkit will form one element of a coordinated effort involving a wide range of agencies - an initial community of interest meeting included representatives from WHO (which launched its birth defects resolution in May). Deliverables include practical measures to reduce the incidence of birth defects tailored to individual countries e.g. - food fortification and immunization programs, training and health education programs, and service development in areas such as basic treatment, rehabilitation and palliative care, establishing surgical service, and the creation of lay and community support networks. With more resources, medical genetics services could be developed to provide genetic counseling, prenatal diagnosis, and expertise for risk identification and management of genetic conditions. Programs for cascade testing in families, population carrier screening, and improved antenatal and newborn screening may also be introduced. Specific benchmarks include:
Initial meeting with potential community of interest members / meeting with WHO. (May 10)
Finalise pilot chapters on orofacial clefts and neural tube defects + preliminary toolkit testing in Brazil. (Jul/Aug10)
First steering group meeting / workshop to review early pilots of toolkit. Development of the toolkit content - ongoing addition of chapters to include alcohol FASD; Antenatal Screening, Chromosomal Disorders, G6PD, Genetic Services, Haemoglobinopathies, Haemophilia, HDN, Heart Defects, Iodine Deficiency Disorders, Newborn Screening, Pre-conceptual Care Screening and Testing. (Sep 10 - Jun 11)
Advisory Group - expert workshop and community of interest launch in London, followed by beta testing in new pilot site. (Jun 11)
WHO meeting in Indonesia - the final toolkit to be presented. (Nov 11)
According to the March of Dimes Report, every year around eight million children are born with birth defects, almost 95% of them in low and middle income countries. At least three million people a year die as a consequence of birth defects. For those affected, and for the families who care for them, the personal, social, and economic costs are considerable. As well as suffering the burden of the condition itself, many face financial hardship, stigma, and discrimination, sometimes even abuse of their human rights. Despite efforts to raise the profile of birth defects on the global public health agenda, this issue is still not accorded the political priority it deserves.
SEEKING: Financial Resources, Implementing Partners, Media/Marketing Opportunities
The PHG Foundation seeks financial support for toolkit piloting, development of web-based and other platforms for delivering the toolkit health economics input, travel bursaries for low income country stakeholders, translation of the toolkit into other languages and international workshop costs. The Foundation would welcome new members into the community of interest - including maternal and child health organisations or those developing health services within low and middle income countries. Assistance with promoting the impact of the project to a wider audience - especially in the US.
OFFERING: Implementing Partners, Best Practice Information, Media/Marketing Opportunities
The PHG Foundation is an independent, public health focused, charitable foundation based in Cambridge, UK. Its mission is to 'make science work for health' and it has led the field of international public health genomics since 1997. Its work supports the effective and responsible translation of biomedical science into health policy and practice. In addition to the birth defects programme it is also working on whole genome sequencing and its applications in health care as well as a number of other projects relating to genomics and health policy. The Foundation is happy to partner with other organisations in projects where it can add value, experience and knowledge. The website news section is highly regarded and welcomes relevant stories from appropriate organisations.
The PHG Foundation would be happy to partner with any organization operating in the maternal and child health field that wishes to join their Community of Interest. PHG would also be very open to approaches from the corporate sector and delighted to discuss ways in which they could be involved. If a representative from CGI based in the UK would care to attend the launch event in London on June 28th they would be very welcome indeed.