Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/ surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care. Pediatrics 2014;133:e1451-e1460

Advances in newborn screening technology, coupled with recent advances in the diagnosis and treatment of rare but serious congenital conditions that affect newborn infants, provide increased opportunities for positively affecting the lives of children and their families. These advantages also pose new challenges to primary care pediatricians, both educationally and in response to the management of affected infants. Primary care pediatricians require immediate access to clinical and diagnostic information and guidance and have a proactive role to play in supporting the performance of the newborn screening system. Primary care pediatricians must develop office policies and procedures to ensure that newborn screening is conducted and that results are transmitted to them in a timely fashion; they must also develop strategies to use should these systems fail. In addition, collaboration with local, state, and national partners is essential for promoting actions and policies that will optimize the function of the newborn screening systems and ensure that families receive the full benefit of them. INTRODUCTIONIt's another busy day in pediatric practice, even before you receive the telephone call from the state newborn screening program. One of your newborn patients has an out-of-range result* on the screen for a rare but serious congenital condition. "Now what?" you wonder, as you begin to take down the notes. What additional testing is needed? What is the treatment regimen, and when does it begin? What do you tell the parents? And, what do you do about the rest of your schedule?In the past decade, new technologies have led to a rapid expansion in the number of congenital conditions that are targeted in state newborn screening programs. As newborn screening programs expand, the likelihood increases that individual pediatricians will one day receive an out-of-range screening result for an unfamiliar congenital condition for one of their patients.In 2005, the American Academy of Pediatrics (AAP) endorsed a report from the American College of Medical Genetics (ACMG), which recommended that all states screen newborn infants for a core panel of 29 treatable congenital conditions and an additional 25 conditions that may be detected by screening (Appendix 1). 1 The Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) † also adopted that report. Some states are now screening for more than 50 congenital conditions, many of which are rare and unfamiliar to pediatricians and other *A note about language: although physicians often think of screening results as being "normal/abnormal" or "negative/positive," laboratories use the more specific language of "in range" and "out of range" to report results. We felt that it was appropriate to use and promote this language for the sake of clarity and consistency. For ease of reading, we use "parent" as a generic term to connote the adult who is responsible for a child's health care; we recognize t...

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