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Orofacial clefts (OFCs) affect about 6,800 births each year in
the United States. Orofacial clefts include conditions such as cleft
lip and cleft palate.
Some genetic and environmental risk factors have been found, but
many clefts are not linked to any of these factors. Little is known
about long-term outcomes for children with OFCs.
In 2006, CDC held a workshop to identify gaps in knowledge about
OFCs and recommend public health research needed to fill those gaps.
Experts at the workshop identified 18 research needs related to OFCs.
Following is a summary of those needs, in order of priority:
- Better describe the phenotypes of OFCs. Being able to divide
affected infants into similar groups will improve the chance of
finding causes and risk factors for OFCs and will help predict
outcomes for children with clefts.
- Learn more about how a mother’s diet affects OFCs and study
how smoking and other exposures can interact with dietary
factors.
- Study whether early screening measures for some common
learning skills can predict oral reading and comprehension
outcomes among children with OFCs. Also, look at how the timing
of interventions and surgeries can affect speech and hearing
outcomes and school success.
- Better understand which factors have the biggest effect on
quality of life for children with OFCs and their families.
- Raise awareness about the risks of maternal smoking and OFCs.
Add the link between smoking and OFCs to existing messages that
urge women not to smoke during pregnancy. Conduct research to
design and test messages about smoking and OFCs.
- Learn more about long-term outcomes for children with OFCs.
Assess the risk of chronic disease, oral health, and early death
among this population.
- Find out how timing of diagnosis (before or after birth)
affects outcomes for children with OFCs. Look at effects on
parental stress; family coping; costs; health care
decision-making; and infant care, feeding, and weight gain.
- Better understand how maternal obesity, diabetes, and
insulin resistance affect the risk for OFCs.
- Learn more about how the type, frequency, and quality of
health care can affect outcomes. Compare outcomes of children
whose care follows standard guidelines with those of children
whose care does not.
- Study differences in prevalence of OFCs among various racial
and ethnic groups to better define the causes of OFCs.
- Study the effects of a mother’s use of common medications
and OFCs. Among the drugs to be studied are those for depression
and epilepsy.
- Find out more about the mental health of teenagers with OFCs.
- Better estimate the financial costs of OFCs for both
families and society.
- Look at possible links between maternal infections and OFCs.
- Study how a mother’s use of alcohol can affect the risk for
OFCs.
- Find out if access to and quality and cost of care for OFCs
differ by the type of provider, purchaser, or payor.
- Measure how well current interventions to treat dyslexia
work for children with OFCs (who are at higher risk for
dyslexia).
- Study possible links between OFCs and air pollution.
Yazdy MM, Honein MA, Rasmussen SA, Frias J. Priorities for future
public health research in orofacial clefts. Cleft Palate Craniofac
J. 2007;44(4):351–7.
Date:
January 14, 2008
Content source: National Center on Birth Defects and Developmental
Disabilities
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