Orofacial clefts
Changing lives by making smiles
I
Professor Peter Mossey, professor of craniofacial development and associate dean for research at Dundee Dental School, describes how a trilateral partnership aims to help change lives in India Experts in India estimate the prevalence
nfants born with orofacial clefts (OFC) have high rates of infant mortality in developing countries where access to care is limited, and feeding problems at birth can result
in malnutrition, aspiration pneumonia, purposeful neglect or even infanticide. Survivors face a lifetime of specialised multi-disciplinary care and can have serious communication problems due to both speech and hearing defects. Studies have shown that they tend to suffer psycho- logically and have higher rates of mortality in adulthood. Survivors are also at major societal
disadvantages in India in that they may not attend school, they are discriminated against in employment, may be shunned by society and often fail to find marriage partners because of their disability. OFC is therefore regarded as a significant
maternal and child health inequality issue that has been highlighted at a global level through the 20ı0 World Health Assembly, is being prioritised in the World Health Organisation (WHO) Global Burden of Disease (GBD, 20ı2) initiative, and forms part of India’s healthcare and social agenda in the Millennium Development Goals.
of OFC to be higher in India than in many western countries, with between 27,000 and 35,000 infants born with OFC in India per annum, and there is an increasing research focus towards discovery of what the genetic and environmental causes are. This project aims to conduct research into the aetiology of OFC, and simultaneously raise awareness and educate communities about primary prevention. The major focus of the proposed
collaboration is to bring complementary research expertise from centres with an international reputation, in the UK, the US and India, together so that maternal metabolism, nutrition and environ- mental pollution can be simultaneously addressed in the context of aetiology of birth defects in general in India, and OFC in particular, can be addressed
“Survivors face a lifetime of
specialised multi- disciplinary care”
with comprehensive, validated research methodologies.
Origins of the trilateral partnership A grant from the US National Institutes of Health (NIH) in the field of cleft lip and palate research, with myself and Professor Ronald Munger of Utah State University as two of the co-applicants, was administered by WHO between the years 2000 and 2004. A series of consensus meetings was
conducted to discuss and agree on research strategies for reducing the global health care burden of cleft lip and palate. These consensus meetings involved representa- tion from India and parts of south-east Asia where there was a great deal of unmet need. Professor Munger was selected as one of the US representatives for his expertise in the field of cleft lip and palate and particularly the field of nutritional epidemiology and environmental factors in the aetiology of cleft lip and palate. I was selected to provide expertise on
genetics and gene environment interac- tion research. With the particular problem identified in India, negotiations began to target India as an area of the world in special need and dialogue on research initiatives have continued since. Docu- ments on research strategies arising from these consensus meetings were produced by WHO and published and disseminated to all member states.
International delegation at the Sri Ramachandra University and Medical Research Centre in March 2012, when the details of the submission for the tri-lateral UK-India-US UKIERI grant proposal was discussed. Prof Peter Mossey is second from left
20 Scottish Dental magazine
Why India? The prevalence of infant mortality in those who are born with cleft lip and palate in India is higher than infant mortality in patients born with clefts in the western world. The reasons for this require investigation and explanation, but may include feeding problems at birth resulting in malnutrition, aspiration pneumonia, purposeful neglect or even infanticide. India has well-developed exper- tise in primary cleft surgery, but
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