Integrating Newborn Screening: Long-term Follow-up into Primary Care Practices
This funding opportunity announcement solicits applications for the demonstration program “Integrating Newborn Screening long term follow-up into primary care provider practices” Applicants will investigate the feasibility of implementing the long-term follow-up responsibilities outlined in the 2011 report, “What Questions Should Newborn Screening Long-term Follow-up Be Able to Answer? A statement of the US Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC)” and will utilize grantee networks to contribute to the long-term follow-up information collection on patients identified by newborn screening. The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) provides advice to the Secretary on reducing the morbidity and mortality associated with heritable disorders, with particular emphasis on newborn screening (NBS). Efforts to systematically evaluate health outcomes, and impact, beyond long-term survival, with a few exceptions, are just beginning.  To facilitate these nascent efforts, the SACHDNC reviewed the goals and expectations of the type of long-term follow-up that is required to ensure best outcomes and improve access to care for patients identified through newborn screening. The key questions follow the central components of long-term follow-up - care coordination; evidence-based treatment; continuous quality improvement, and new knowledge discovery-and are framed from the perspectives of the state and nation, primary and specialty healthcare providers, and the impacted families. This initiative will use the overarching questions outlined in the report for primary care practices to demonstrate the feasibility of accomplishing those roles by answering the questions outlined for primary care: Are children/adolescents receiving coordinated care through a medical home? How are the children/adolescents doing clinically? Are children identified through NBS and enrolled in care doing better than those identified clinically? As the primary care provider, am I doing the best for my patients? Do children in my care have the opportunity to enroll in clinical research studies? Applicants are strongly encourage to leverage existing resources such as NICHD’s Newborn Screening Translational Research Network’s (NBSTRN) long-term follow-up data base and common data elements or to dovetail with established newborn screening long-term follow-up projects. Appropriate informed consent and IRB procedures should be followed in all situations. Answers to these questions will provide data for the feasibility of accomplishing long-term follow-up in the primary care setting. These overarching questions will be used to demonstrate the abilities of primary care practices to provide accurate and ongoing information on patients identified with heritable disorders on newborn screening to public health departments and long-term follow-up programs. Successful applicants will: Demonstrate the capacity to link primary care practices to state newborn screening follow-up programs in a functional manner in order to facilitate seamless follow-up of infants identified with NBS conditions. The grantee will identify and begin collaborations with two or more primary care practices, that have at least one patient that has been identified through newborn screening and/or a long-term follow-up network (e.g., Community Health Centers; Federally Qualified Health Centers or other practice supported by the Bureau of Primary Health Care at HRSA to State newborn screening systems)  The primary care practices and long term care follow up networks must have established communications and be working within an established Regional Collaborative through HRSA’s Genetic Services grantee network. Demonstrate a plan for assessing the feasibility of establishing long-term follow-up in a primary care setting. Can the clinics working with the grantee answer the following questions: What number of children (combined and by specific disease) identified by the newborn screening program and enrolled in care have an individual health/care coordination plan that is updated at regular intervals? What number of children identified through NBS and enrolled in care are doing better than those identified clinically? What number of NBS disorders in children identified through NBS and enrolled in care have best practices available for ongoing disease management? What number of children identified through NBS and enrolled in care are enrolled in clinical research related to their disorder?  Develop a work plan that leverages existing resources. such as NICHD’s Newborn Screening Translational Research Network’s (NBSTRN) long-term follow-up data base and common data elements; and including established newborn screening long-term follow-up projects incorporating clinical outcome data collection. Appropriate informed consent and institutional review board (IRB) procedures should be followed in all situations.
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