272829 Baby's First Test: Connecting the people to public health

Tuesday, October 30, 2012

Natasha Bonhomme , Maternal and Child Health, Genetic Alliance, Washington, DC
Elizabeth Stark, MS, CGC , Genetic Alliance, Washington, DC
Newborn screening is quickly approaching its 50th anniversary in the US. However, many parents still are unaware of the specific conditions for which babies receive screening in their state, the types of screening, and who to contact for more information. As more conditions are added to state panels, healthcare providers are having a harder time finding “just in time” information to handle out-of-range results or a diagnosis. BabysFirstTest.org is the nation's clearinghouse of newborn screening information and serves as a comprehensive guide to address the growing need for centralized, easily accessible, and accurate newborn screening information. The overarching vision is to connect parents and healthcare providers to resources and information relevant to the more than four million newborns screened annually.

Since the launch in September 2011, the project team added and refined resources, including condition pages for Critical Congenital Heart Defect , HIV, and other conditions detected at birth. As of May 2012 over 29,000 unique visitors explored the new web tool.This poster will detail how we utilized novel partnerships formed through social media, our consumer task force, challenge awards, and traditional marketing strategies to reach a wide variety of audiences. We will use specific data points collected during the launch to illustrate how access to the website increased and which strategies were most effective.

Learning Areas:
Communication and informatics
Public health or related organizational policy, standards, or other guidelines

Learning Objectives:
x

Keywords: Screening, Infant Health

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I supervised four federally funded projects having to do with newborn screening and prenatal diagnoses. I launched the nation’s first center on newborn screening education, Baby's First Test. I serve on committees including: Co-Chair of the Genetics and Bioethics Committee, MCH Section APHA; Association of Public Health Laboratories Committee on Newborn Screening and Genetics in Public Health; and the Subcommittee on Education and Training, Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.