Sunday, June 21, 2009

Newborns Clearinghouse Needed

HRSA posted the announcement “Clearinghouse of New Born Screening Information” on June 15th soliciting applications to establish and maintain a central clearinghouse geared to newborns. The clearinghouse will be complete with current information, on resources, services, and research data that is now possible to obtain from newborn screenings. This information will be made available to parents, family members, expectant parents, health professionals, industry representatives, and the public to increase awareness, knowledge, and understanding of newborn screening. The clearinghouse also needs to maintain current data on quality indicators of newborn screening performance.

The closing date for the application is July 15th. Approximately $750,000 will fund one cooperative agreement award to develop the Clearinghouse. Eligible applicants can include any public or private entity, Indian tribe or tribal organization, faith-based or community organization.

The requirements for the Clearinghouse are to:

  • Be available on the Internet and updated at least quarterly
  • Provide links to websites that supply research-based information on newborn screening tests currently available throughout the U.S
  • Provide information for each state concerning newborn conditions and screening services available from laboratories
  • Provide information about current research
  • Provide information about the availability of federal funding for newborn and child screening for heritable disorders
  • Maintain an interactive forum

The Clearinghouse needs to be developed in consultation with health educators and medical homes. The Clearinghouse needs to take into consideration health literacy and cultural competence, so that a fully integrated Clearinghouse system is designed and implemented to serve the needs of a diverse population.

For more information, go to