Regional Genetic and Newborn Screening Services - Supplement

The summary for the Regional Genetic and Newborn Screening Services - Supplement grant is detailed below. This summary states who is eligible for the grant, how much grant money will be awarded, current and past deadlines, Catalog of Federal Domestic Assistance (CFDA) numbers, and a sampling of similar government grants. Verify the accuracy of the data FederalGrants.com provides by visiting the webpage noted in the Link to Full Announcement section or by contacting the appropriate person listed as the Grant Announcement Contact. If any section is incomplete, please visit the website for the Health Resources and Services Administration, which is the U.S. government agency offering this grant.

Regional Genetic and Newborn Screening Services - Supplement: The purpose of this grant activity is to fund a supplemental initiative to support the Regional Genetic and Newborn Screening Collaboratives in their efforts to provide or support follow-up activities in their regions for infants identified in newborn screening programs. Newborn screening in the United States is a public health program aimed at the early identification of conditions for which early and timely interventions can lead to the elimination or reduction of associated mortality and morbidity. This screening takes place within the context of a newborn screening system, and involves the following components: screening, follow-up, diagnosis, management, and evaluation and education. The importance of ensuring that results of newborn screens are shared with the child's medical home is also part of this system and involves a partnership at each step of the newborn screening process. The program's efficiency and effectiveness have depended upon the smooth integration of sample collection, laboratory testing, follow-up, diagnosis, timely treatment, and tracking of outcomes. This supplemental grant activity focuses on the follow-up component of newborn screening. Both the Regional Genetics and Newborn Screening Collaboratives and the Natio! nal Coordinating Center for the Collaboratives are eligible for funding. Applicants may address one or more projects in their application. Regional Collaboratives: The performance of each component of newborn screening and its contribution to the overall system must undergo quality assurance and monitoring. Through a cooperative agreement with the University of Texas Health Science Center in San Antonio, the Maternal and Child Health Bureau and its National Newborn Screening and Genetics Resource Center have developed a periodic evaluation and assessment scheme (PEAS) to aid State newborn screening programs in their process of evaluation and assessment of their newborn screening programs, in particular the follow-up component of these programs. It is expected that all Regional Collaborative applicants will address in their applications how they will utilize the PEAS tool in their regions. In addition, and based on their assessment through use of the PEAS tool, supplemental project funding will support regional collaborative and State public health agencies in various projects they have developed to strengthen their newborn screening follow-up systems. Regional Collaborative applicants should focus on one of the following three activities: Establishment of integrated information system infrastructure to track infants identified as screen positive in newborn screening programs. This system should be based on both short and long term follow-up capacity. This effort may start with the identification of a methodology or tool for monitoring short- and long-term follow up in a few States within the region that can be adapted to the entire region. This tool should include information needed by public health, the medical home, and other community-based providers. The regional collaboratives should begin with those States in their regions that have developed integrated information systems. Establishment of educational initiatives for parents and primary care providers, including prenatal providers, to increase their understanding of newborn screening programs. This activity should utilize validated materials, including the DHHS produced Newborn Screening educational materials and the ACTion sheets developed by the National Coordinating Center for the Regional Collaboratives; Establishment of regional studies on newborn screening laboratory test performance. This should include methods for rigorous analysis of outcomes of screen positive cases in order to improve laboratory screening and the positive predictive value of screening tests. National Coordinating Center for the Collaboratives: Develop and implement pilot studies for follow-up and treatment guidelines for the diagnosis and management of genetic conditions identified through newborn screening programs. These guidelines should be accompanied by culturally and linguistically appropriate materials for patients and their families. Develop guidance materials (ACTion sheets, diagnostic algorithms) for primary care providers for genetic conditions other than those related to newborn screening. Again, these materials should be accompanied by culturally and linguistically appropriate materials for patients and their families. Develop and implement a national plan for educational programs to address primary care provider education about newborn screening and genetics. The plan should utilize venues that are comfortable and accessible to primary care providers.