Newborn screening during an emergency.

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Keeping newborn screening up and running during an emergency is a daunting but critical task for states. For babies with metabolic conditions, a break from their medications and dietary treatment can be life-threatening.

State officials face problems ranging from damaged labs and equipment to a lack of laboratory scientists and qualified health-care providers. Moreover, disaster can strike at any part of the process, from transporting the specimen, to screening and testing, to treating and managing patients with genetic diseases.

States vary in how they organize emergency response programs. Some states--typically larger ones with experience preparing for and responding to disasters--have taken steps to protect the newborn screening infrastructure. Most states, however, have only one laboratory available to them, with little capacity to absorb additional volume, according to the Emergency Preparedness for Newborn Screening and Genetic Services National Workgroup.

To maintain critical services during a crisis, about two dozen states have funded new and better-equipped laboratories, according to the Association of Public Health Laboratories. Mutual aid agreements with other states can also help. They allow states to back up each other when an emergency threatens newborn screening programs.

States are also promoting electronic records, so that if patients must leave their homes, their new providers have instant access to their medical records. Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin are working together on a web-based database of critical health information needed during an emergency, such as medications and...

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