Summer 2009 Newsletter

CARES Foundation, Inc.

Newborn Screening

In the United States, the focus of CARES Foundation’s newborn screening efforts continues to be on dried blood spot samples. CARES families joined forces in Texas writing letters and speaking to the media in support of House Bill 1672 requiring disclosure to parents or guardians that newborn screening blood spot samples will be stored indefinitely by the State and could be used for research. They, along with CARES, urged the maintenance of newborn screen blood spots as it both continues Texas’ tradition of excellence and further strengthens the State’s newborn screening program. It ensures that newborn screening testing procedures are accurate and up-to-date and bolsters the work of the clinical research community. Thanks to the efforts of these families and other concerned citizens across the state of Texas, HB 1672 was signed into law by Governor Perry on May 27, 2009.

Abroad, the state of Goa soon will be the first state in India to mandate newborn screening of all infants including testing for CAH as reported in the Times of India on July 5, 2009. Under a pilot program, all children born in government hospitals have been tested for a variety of conditions since 2008. In this time, 8,200 babies were screened with 53 of them testing positive for a condition included in the Goa newborn screening panel. In Goa, however, only about 45% of children are born in government hospitals. With this expansion of the newborn screening program to include private hospitals, all children will now have a chance at a healthy start to life.