Generating models to maximize benefits in newborn screening

In 2007, Genetic Alliance received two cooperative agreements from the Health Resources and Services Administration (HRSA) Genetic Services Branch of the Maternal and Child Health Bureau. Both grants are three-year special projects of regional and national significance. These projects will put forward models based on consumer and medical home perspectives to minimize harm and maximize the benefits of the newborn screening system for all stakeholders. Read the full press release here

At Genetic Alliance's 2009 Annual Conference, Discovering Openness in Health Systems, Natasha Bonhomme, Vice President of Strategic Development, presented an overview of the Consumer Focused Newborn Screening Projects. Download the PowerPoint from the Resource Repository

CF-NBS Quantitative Project
This cooperative agreement with the Genetics and Public Policy Center examines the public's awareness and understanding about newborn screening tests, tools, and technologies. The project has two aims. The first is to assess the public's awareness of issues inherent in newborn screening: availability of screening, expanded screening, reasons for screening, methods of screening, support during and after screening, hypothetical false positives, and carrier identification. The second aim is to quantify changes in parental attitudes and responses with increased education and knowledge. An assessment of these issues will inform the development of models to educate parents, create systems for informed decision-making, and provide data to policymakers to determine which tests should be offered.

CF-NBS Qualitative Project
This cooperative agreement with the University of Maryland Medical School seeks to understand the impact of false positive screens and carrier identification on the newborn, the family, and the newborn screening system. The project uses unstructured interviews, focus groups, and structured interviews to understand the experience of families and professionals with respect to false positive screens and carrier identification. The results will inform models for improving newborn screening in the context of the medical home.

Consumer Task Force on Newborn Screening
Established in August, 2007, this group of nine parents and members of advocacy organizations brings a unique focus to both CF-NBS projects, integrating consumer perspectives into our planning, implementation, and analysis. Through novel forums for discussion, the task force ensures that the consumer perspective is central to the models produced from these projects, which will promote family-centered care and overall improvements to the newborn screening system. Learn more here

These projects are supported by cooperative agreements U33MC07951 and U33MC07952 with the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA). The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of HRSA.