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Better outcomes are a priority for all those who care about birth defects and rare diseases. Public health surveillance and epidemiologic data tracking historically have provided good data on disease occurrence but at
most uncertain value in promoting better outcomes, be these in terms of supporting primary prevention or better
We propose three enhancements to improve the value of surveillance. First, merge: eliminate the largely
artificial separation between birth defects and rare diseases in surveillance. Second, expand the scope of surveillance to ‘triple surveillance’: include in surveillance the three components of the causal chain from primary
cause (e.g., folic acid insufficiency) to disease occurrence (e.g., spina bifida prevalence) and further to health
outcomes (e.g., mortality, morbidity). Third, integrate public health with clinical surveillance: streamline data
collection (avoid ‘recreational data collection’) and use the data rapidly not only for epidemiologic assessment
but also for evaluation and improvement of clinical care.
Many countries have one or more of the elements of this framework already in place. Typically, however, they
are not integrated, and work and data get wasted. Fundamentally, these enhancements require rethinking
priorities, partnerships and data sharing policies. By reducing waste (e.g., activities leading to data being collected
but not used) they will add value and probably decrease costs. Importantly, such systems can help make
visible the health issues of a population and the benefits (or lack thereof) of interventions, and support quality
improvement in prevention and delivery of care.
Rare diseases, Birth defects, Surveillance, Health outcomes, Prevention
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