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About Expanded Newborn Screening

How to Obtain Screening
For Parents
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Information About Disorders

Financial, Ethical, Legal and Social Issues (FELSI)

NBS Educational Tools......
Introduction
Message Library
Graphics Library
Disorder Descriptions
Guidelines

Legal Disclaimer

An Introduction to the Message and Graphics Libraries

How Do I Use the Message Library?

  • The Message Library contains key pieces of information, or "messages" that were:
    • Adapted from a review of state brochures
    • Requested by parents
  • Key messages are:
    • In a clickable list within our Message Library
    • Written using simple language at about the sixth grade reading level
    • Not copyrighted
    • Can be included or adapted to fit within your brochure
  • To select a message for use in your brochure:
    • Click on the category you want to use
    • Highlight the message
    • Copy it, then paste it into your document
  • Messages may be adapted to meet the needs and requirements of your state

What if I Want to Include Disorder-Specific Information?

  • Parents may be overwhelmed by a description of each of the disorders included in a screening panel
  • However, if you would like to provide disorder-specific information in your brochure, you may refer to our parent fact sheets or our disorder descriptions

How Do I Use the Graphics Library?

  • The Graphics Library contains key pictures and graphics that were:
    • Adapted from a review of state brochures
    • Requested by parents
  • Graphics are in a clickable list within our Graphics Library
  • To select graphics for use in your brochure:
    • Click on the category you want to use
    • Select an image and right click on it
    • Click on the "save" button to save the image to your computer
    • Insert it into your document

Who Created the Message and Graphics Libraries?

  • The Libraries were created by the Screening, Technology, and Research in Genetics (STAR-G) Project
  • The STAR-G Project is a multi-state project working to improve information about newborn screening and genetic testing
  • The project is supported by a grant from the Maternal and Child Health Bureau, Health Resources and Service Administration Genetic Services Branch, MCH Project #:1 H46 MC 00189-03

How Were the Message and Graphics Libraries Created?

The two Libraries were created using input from parents
  • Parent input was collected through:
    • 3 focus groups in Alaska
    • 3 focus groups in California
    • 12 focus groups in Hawaii
    • 3 focus groups in Oregon
    • 4 focus groups in Washington
    • 1,413 completed surveys in California
    • 633 completed surveys in Hawaii
  • Parents were of varying ethnic, educational, and socio-economic backgrounds
  • All messages and graphics were approved by participating parents and our project Steering Committee

Where Can I Get More Information?

  • For more information on our focus groups and surveys, please contact us.

 

Legal Disclaimer/Funded by HRSA/MCHB
Contact: info@newbornscreening.info

Last updated: 07/28/2005