Department of Health and Human Services: Newborn Screening Clearinghouse Grant Program

More specifically, the goals of the Clearinghouse are to:
Create an interactive, web-based forum orgainized in a clear format for multiple audiences that promotes information sharing and dissemination of authoritative and/or evidence-based: lay informational and educational materials; community training initiatives; health care provider educational materials; newborn screening best practices and guidelines; and other information and tools that promote culturally sensitive education and decision-making regarding newborn screening for heritable disorders.
Conduct activities to increase awareness, knowledge and understanding of newborn screening for parents and family members of newborns, health professionals, industry representatives, policy-makers, and other members of the public.
Conduct activities to increase awareness, knowledge and understanding of newborn screening polices determined by the DACHDNC.
Conduct activites to increase awareness, knowledge and understanding of newborn screening of newborn genetic conditions and screening services for expectant individuals and families.
Promote and support communities in their efforts to understand the newborn screening process that is specific to their community, region and/or State.
Promote national and state level policies and best practices regarding newborn screening.
Form partnerships with various stakeholders including Federal and non-Federal organizations, as well as other HHS funded organizations in order to collaborate, coordinate, promote, and support their efforts and to inform innovative methods of dissemination and educational outreach.
Develop a robust evaluation plan that analyzes project activities and results.

Requirements:
Consult with newborn screening, genetics, information technology, health education, medical home, health literacy, cultural competency and patient/family-centered care experts to design a system that will serve the needs of diverse populations and stakeholders.
Create a system that can identify and review evidence-based newborn screening best practices and information and tools that promote culturally competent education and decision-making regarding newborn screening for heritable disorders and disseminate through an interactive web-based forum.
Ensure that the Clearinghouse is available on the Internet and is updated at least quarterly.
Provide links to websites and other sources of credible information regarding newborn screening, including but not limited to Government-sponsored, nonprofit, and other Internet websites of laboratories that have demonstrated expertise in newborn screening that supply research-based information on newborn screening tests currently available throughout the United States.
Provide information and/or links about the newborn conditions and screening services available in each State from certified newborn screening laboratories including information about supplemental screening that may be available.
Form partnerships with various newborn screening stakeholders including HRSA/MCHB funded grantees and other Federal and non-Federal organizations.
Support HHS funded organizations and other stakeholders¿s efforts in data collection for quality improvement in the newborn screening system and provide links to current quality indicators that measure performance of newborn screening.
Provide links to current research on conditions for which newborn screening tests are available.
Provide information about the availability of Federal funding for newborn and child screening for heritable disorders.
Maintain an interactive newborn screening community forum.
Develop a robust methodological evaluation to specifically measure usability, accuracy, completeness, currency, and objectivity of the information on the Clearinghouse site and to assess reach of the information disseminated by the Clearinghouse.Activities should support the collection of qualititative and quantitative data to measure the impact of the Clearinghouse.
Ensure that the activities proposed minimizes duplication and supplements, not supplants, existing information sharing efforts.