Public Release:  March of Dimes statement on newborn screening report

March of Dimes Foundation

WHITE PLAINS, N.Y., SEPT. 22, 2004 -- The March of Dimes today issued the following statement on the report on newborn screening prepared for the Maternal and Child Health Bureau of the U.S. Health Resources and Services Administration by the American College of Medical Genetics (ACMG):

The March of Dimes supports comprehensive newborn screening for all babies in this country, regardless of their place of birth. Our policy is to support screening for specific conditions when there is a documented benefit to the child and there is a reliable test that enables early detection from newborn blood spots or other means. We support parents' rights to be fully informed about their baby's screening results, and we support expansion of health care provider education about newborn screening. March of Dimes state chapters and their partners work closely with governors, state legislators, and health departments to improve state newborn screening programs.

The March of Dimes strongly commends the ACMG report for advancing the field of newborn screening, defining a uniform panel for newborn screening, and providing a policy framework for the states. We support the recommendations in this report and we urge the Secretary of Health and Human Services to accept them as a national standard for newborn screening.

Based on the findings of this report, the March of Dimes will expand our policy on newborn screening as follows:

We will urge every state to screen every baby for at least the 30 disorders listed in the ACMG report. These 30 disorders meet our inclusion criteria, and include all of the nine metabolic tests plus hearing screening contained in our previous policy. We will revise our periodic evaluation of states' performance on newborn screening to include at least these 30.

We will urge states to provide test results for an additional 25 "reportable" conditions named in the ACMG report for which there are reliable tests but not yet documented treatments. We also will revise our periodic evaluation of states to include this reporting.

It must be noted that various organizations have alternate ways of classifying and counting many of these disorders and may have different number totals for these same conditions.

We will urge states to inform all parents prospectively about the potential benefits and availability of comprehensive newborn screening.

We will recommend that professional groups, such as the American Academy of Pediatrics, as well as government policy makers, develop better systems for educating health professionals about newborn screening.

We urge public and private entities to work together to strengthen newborn screening programs. This would include developing and validating methods to detect and treat disorders, as well as ensuring prompt followup and counseling for affected families.

Newborn screening is a rapidly changing field. We know that expert opinion on newborn screening will continue to evolve as medical evidence mounts, and we stand ready to update our recommendations to the states and to the public. Likewise, we urge that the ACMG report be periodically updated to accommodate new data and capabilities. In addition, there must be timely review of infectious diseases and other disorders in newborns for possible future inclusion in universal newborn screening, using the ACMG report as a model.

The March of Dimes will continue to work at both the state and federal levels for comprehensive programs and equity in newborn screening for every baby in this country. We urge all concerned individuals, groups, and health care providers to work even more closely together to achieve this common goal.

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The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies and in 2003 launched a five-year campaign to address the increasing rate of premature birth. For more information, visit the March of Dimes Web site at marchofdimes.com or its Spanish Web site at nacersano.org.

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