TABLE 2.

From Task Force Report to Now

RecommendationArea of EffortTitleMediumDate/StatusNotes
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesNewborn Screening Fact SheetsAAP Policy Statement by Committee on GeneticsCurrently being revisedMultidisciplinary writing group organized
The pediatrician should assist the family in understanding the diagnosis, symptoms, and potential implications of a diagnosed genetic/metabolic condition, as well as the availability of genetic counseling, family testing, and other family support services.Policy statements/technical reports/practice guidelinesNewborn Screening Fact SheetsAAP Policy Statement by Committee on GeneticsCurrently being revised
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesGenetic Aspects of the Evaluation of the Child With Development Delay and Mental RetardationAAP Policy Statement by Committee on GeneticsCurrently being developed
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesTechnical Report: Congenital Adrenal HyperplasiaSection on Endocrinology technical reportReaffirmed in 2004
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesManagement of Hyperbilirubinemia in the Newborn 35 or More Weeks of GestationSubcommittee on Hyperbilirubinemia: Practice GuidelinesJuly 2004
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesHealth Supervision for Children With Turner SyndromeAAP Policy Statement by Committee on GeneticsMarch 2003
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesHealth Supervision for Children With Sickle Cell DiseaseAAP Policy Statement by Section on Hematology/OncologyMarch 2002
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesHealth Supervision for Children With Down SyndromeAAP Policy Statement by Committee on GeneticsFebruary 2001
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesMaternal PhenylketonuriaAAP Policy Statement by Committee on GeneticsFebruary 2001
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesHealth Supervision for Children With Williams SyndromeAAP Policy Statement by Committee on GeneticsMay 2001
The pediatrician should follow positive screening results to diagnosis, including repeated screening and diagnostic testing.Policy statements/technical reports/practice guidelinesEthical Issues With Genetic Testing in PediatricsAAP Policy Statement by Committee on BioethicsJune 2001
The pediatrician should follow positive screening results to diagnosis, including repeated screening and diagnostic testing.Policy statements/technical reports/practice guidelinesHuman Embryo ResearchAAP Policy Statement by Committee on Bioethics and Pediatric ResearchSeptember 2001
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesEvaluation of Newborns With Developmental Anomalies of External GenitaliaCommittee on Genetics, Section on Endocrinology and Section on UrologyJuly 2000
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.Policy statements/technical reports/practice guidelinesMolecular Genetic Testing in Pediatric PracticeAAP Policy Statement by Committee on GeneticsDecember 2000
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.CollaborationPartnering with AAFP on genomicsAAFP's 2005 ACF incorporates the AAP Committee on Genetics representation2004–2005Genomics was identified as AAFP's 2005 ACF; AAP is partnering to ensure incorporation of pediatric perspectives, specifically regarding the areas of prenatal screening, newborn screening, and developmental disorders
Parental knowledge should be reinforced after delivery through educational materials and discussion as needed by the infant's pediatrician or primary care health professional and/or knowledgeable hospital staff members.CampaignSafe First Week of Life CampaignCampaign to address needs of mothers and practitioners to ensure optimal health during infant's first weeks of lifeOngoingCampaign halted by lack of funds
Prospective parents should receive information about newborn screening during the prenatal period, preferably during a routine third-trimester prenatal care visit.CampaignSafe First Week of Life CampaignCampaign to address needs of mothers and practitioners to ensure optimal health during infant's first weeks of lifeOngoingCampaign halted by lack of funds
The pediatrician should maintain a central record and database containing all pertinent medical information about the child.Expert meetingEHR expert meetingNational meeting for experts in the EHR field to discuss integration of pediatric needs into development/implementation/functionality of EHRSeptember 2004Recommendations from meeting will be presented to AAP BOD for consideration
The HRSA should engage in a national process involving government, professionals, and consumers to advance the recommendations of the task force and assist in the development and implementation of nationally recognized newborn screening system standards and policies.Expert meeting/advisoryAAP representative appointed to Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and ChildrenNational advisory committee2004 to ongoingStephen Edwards, MD, FAAP, appointed representative
The pediatrician should coordinate a seamless system of care with pediatric subspecialty clinics, tertiary care centers, and/or community-based providers when a child is diagnosed with a disorder through newborn screening.State chapter activityEHDIAAP chapters through support of AAP State and Chapter Affairs Division and Division on Children With Special NeedsOngoingIntegrated through role of “Chapter Champions”
The pediatrician should follow positive screening results to diagnosis, including repeated screening and diagnostic testing.Expert meeting/advisoryAutism expert panelAAP expert committee convened2003 to ongoing
The pediatrician should follow positive screening results to diagnosis, including repeated screening and diagnostic testing.Expert meeting/advisoryAAP liaison appointed to attend the conference on Newborn Screening: State Policies and Procedures for Educating Parents about Newborn Screening and the Storage and Use of Newborn Screening Residual Blood SpotsHRSA/MCHB- and UCLA Center for Society, Individual, and Genetics-hosted conferenceNovember 2001Tracey Trotter, MD, FAAP, was appointed liaison
The pediatrician should ensure that all newborns admitted to the practice have received adequate newborn screening and that appropriate documentation of testing is present.State chapter activityChapters work to boost low screening ratesAAP chapter efforts2000Chapter efforts include education and advocacy regarding communication, documentation, and resources for increased use of EPSDT
Collaboration to provide ongoing leadership and support for development of newborn screening standards, guidelines, and policies.CollaborationCollaboration with ACMG to identify recommended screensSteering committee for the AAP/ACMG project2000
The pediatrician should coordinate a seamless system of care with pediatric subspecialty clinics, tertiary care centers, and/or community-based providers when a child is diagnosed with a disorder through newborn screening.Education/publicationAutism ALARMEducational pamphlet on autism and primary care provider's role in diagnosis, management, and communication with familyJanuary 2004
Prospective parents should receive information about newborn screening during the prenatal period, preferably during a routine third-trimester prenatal care visit.Education/publicationCaring for Your Baby and Young Child, 4th edSoftcover bookJune 2004Discusses guidelines for newborn screening
The pediatrician should coordinate a seamless system of care with pediatric subspecialty clinics, tertiary care centers, and/or community-based providers when a child is diagnosed with a disorder through newborn screening.Education/publicationChildhood Hearing: A Sound Foundation in the Medical HomePediaLink module through AAPJuly 2004Online CME course addressing childhood hearing, including genetic causes of hearing loss
The pediatrician should coordinate a seamless system of care with pediatric subspecialty clinics, tertiary care centers, and/or community-based providers when a child is diagnosed with a disorder through newborn screening.Education/publicationSurveillance and Screening in the Medical HomeTraining curriculumSpring 2003
The pediatrician should assist the family in understanding the diagnosis, symptoms, and potential implications of a diagnosed genetic/metabolic condition, as well as the availability of genetic counseling, family testing, and other family support services.Education/publicationSurveillance and Screening in the Medical HomeTraining curriculumSpring 2003
The pediatrician should assist the family in understanding the diagnosis, symptoms, and potential implications of a diagnosed genetic/metabolic condition, as well as the availability of genetic counseling, family testing, and other family support services.Education/publicationInterpreting Screening Tests to Families and Encouraging Follow-throughArticle by Francis Glascoe, PhD2002
Prospective parents should receive information about newborn screening during the prenatal period, preferably during a routine third-trimester prenatal care visit.Education/publicationNewborn Hearing Screening and Your BabyBrochure2002Also available in Spanish
State public health agencies should direct their newborn screening programs to be consistent with professional guidelines and recommendations.Training for physicians on how to advocate in their state for newborn screening to be consistent with AAP policyAAP Chapter Advocacy SummitTraining seminarNovember 2001Highlighted advocacy strategies to enhance newborn screening
General educationGeneral education for pediatricians on newborn screeningContributing to AMA's white paper, Family Medical History in Disease PreventionAAP Committee on Genetics will contribute to AMA's Family Medical History in Disease PreventionOngoing
General educationGeneral education for pediatricians on newborn screeningWhat Follows Newborn Screening? An Evaluation of a Residential Education Program for Parents of Infants with Newly Diagnosed Cystic FibrosisArticle in PediatricsAugust 2004
General educationGeneral education for pediatricians on newborn screeningExamination of the Communication Practices Between State Newborn Screening Programs and the Medical HomeArticle in PediatricsFebruary 2003
General educationGeneral education for pediatricians on newborn screeningDiscovering Fragile X Syndrome: Family Experiences and PerceptionsArticle in PediatricsFebruary 2003
General educationGeneral education for pediatricians on newborn screeningExpanded Newborn Screening for Inborn Errors of Metabolism by Electrospray Ionization-Tandem Mass Spectrometry: Results, Outcomes, and ImplicationsArticle in PediatricsJune 2003
General educationGeneral education for pediatricians on newborn screeningProspective Diagnosis of 2-Methylbutyryl-CoA Dehydrogenase Deficiency in the Hmong Population by Newborn Screening Using Tandem Mass SpectrometryArticle in PediatricsJuly 2003
General educationGeneral education for pediatricians on newborn screeningWhat's New in Newborn Screening?NCE presentation sponsored by Committee on GeneticsOctober 2003
General educationGeneral education for pediatricians on newborn screeningNewborn Screening by Tandem Mass Spectrometry for Medium- Chain Acyl-CoA Dehydrogenase Deficiency: A Cost-Effectiveness AnalysisArticle in PediatricsNovember 2003
General educationGeneral education for pediatricians on Newborn ScreeningNewborn Screening Program Practices in the United States: Notification, Research, and ConsentArticle in PediatricsFebruary 2002
General educationGeneral education for pediatricians on newborn screeningDiagnosis and Treatment of Maple Syrup Disease: A Study of 36 PatientsArticle in PediatricsJune 2002
General educationGeneral education for pediatricians on newborn screeningScientific Assessment of the Utility of Universal Newborn Hearing ScreeningAAP Grand RoundsJune 2002
General educationGeneral education for pediatricians on newborn screeningUniversal Newborn Hearing ScreeningPhysician guide; AAP publication catalog2002
General educationGeneral education for pediatricians on newborn screeningNewborn Screening: Potentials, Challenges, and PoliticsNCE presentation sponsored by Committee on GeneticsOctober 2002
General educationGeneral education for pediatricians on newborn screeningGuidelines for Perinatal Care, 5th edSoftcover bookNovember 2002Includes discussion of practitioner's role in discussing newborn screening with expectant mothers
General educationGeneral education for pediatricians on newborn screeningGenetic Counseling and Neonatal Screening for Cystic Fibrosis: An Assessment of the Communication ProcessArticle in PediatricsApril 2001
General educationGeneral education for pediatricians on newborn screeningSurvey of Pediatrician Practices in Retrieving Statewide Authorized Newborn Screening ResultsArticle in PediatricsAugust 2001
  • CME indicates continuing medical education; AMA, American Medical Association; EPSDT, early and periodic screening diagnosis and treatment; NCE, National Conference and Exhibition.