Page ContentDay 1 - Sunday, April 7Welcome SessionModerator: E. Matt Charles, Illinois Department of Public HealthJoanne Bartkus, PhD, D(ABMM), Minnesota Department of HealthJelili Ojodu, MPH, APHL9:00 am – 10:30 am | Current Recommended Uniform Screening Panel (RUSP) ConditionsModerators: George Dizikes, PhD, HCLD(ABB), Tennessee Department of HealthCarla Cuthbert, PhD, Centers for Disease Control and PreventionPresentations:The State of Newborn Screening Systems in the United StatesCareema Yusuf, MPH, APHLDuarte Galactosemia: Shedding New Light on an Old ProblemAngela Wittenauer, RN, BSN, Emory UniversityNew Disorders Screening Implementation for Mucopolysaccharidosis type I, Pompe, and X-Linked Adrenoleukodystrophy: Best Practices, Models, and Lessons Learned from the New Disorders Implementation ProjectKshea Hale, MPH, APHLDemographic Variability of Newborn α-L-iduronidase (IDUA) and Acid α-glucosidase (GAA) Enzyme Activities in Michigan Michael Sarzynski, Michigan Department of Health and Human Services11:00 am – 12:30 pm | Health Information TechnologyModerators: Ashleigh Ragsdale, MPH, Washington State Department of HealthBrendan Reilly, Texas Department of State Health ServicesPresentations:APHL Health Information Technology (HIT) Activities: An Overview Sari Edelman, MPH, APHLInformatics Needs Assessment based on the Newborn Screening Health Information Technology Resource Guide and Toolkit Mary Kate Yost-Daljev, PhD, J Michael Consulting The Effect of Electronic Reporting and Birth Registry Matching on Pulse Oximetry Screening in Newborns: A One-Year Report from Minnesota Amy Gaviglio, MS, CGC, Minnesota Department of HealthEvaluating Return on Investment of Statewide Implementation of Electronic Demographic Data Reporting Anthony Steyermark, PhD, Minnesota Department of HealthTowards a Newborn Screening Common Data Model David Jones, PhD,Utah Department of Health2:00 pm – 4:00 pm | Keynote Session Beyond the Brochure: Building the Communication BridgeModerators: E. Matt Charles, Illinois Department of Public HealthEric Blank, DrPH, APHLSpeakers: D. Holmes Morton, MD, Central Pennsylvania ClinicGlen Nowak, PhD, Center for Health & Risk Communication, University of Georgia4:30 pm – 6:00 pm | Training/Education/CommunicationModerators: Jennifer Macdonald, RN, BSN, MPH, Virginia Department of HealthDana Smith, RN, South Carolina Department of Health & Environmental ControlPresentations:Standardization in Newborn Screening Communication Adrianna Evans, MPH, Genetic AllianceRevamping Provider Educational Materials for Newborn Screening Referrals John Thompson, PhD, MPH, MPA, Washington State Department of HealthAssessing Patient Comprehension and Preferred Formatting of Newborn Screening Result Reports Katherine Schroepfer, University of MinnesotaUsing Animated Video for Newborn Screening Parent Education Sylvia Mann, MS, CGC, Western States Regional Genetics NetworkDay 2 - Monday, April 88:30 am – 10:00 am | Quality Improvement and Assurance ActivitiesModerators: Joseph Orsini, PhD, New York State Department of HealthMary Seeterlin, PhD, Michigan Department of Health and Human ServicesPresentations:Assessing Newborn Screening Demographic Data Quality Using Correlations with Analytes Travis Henry, PhD, State Hygienic Laboratory at the University of IowaStrategies for Quality Improvement, Quality Control and Cut-off Management: TSH and IRT Kim Hart, MS, LCGC, Utah Department of HealthEstablishing Appropriate Cut-offs for Methionine Levels in Premature Newborns by Gestational Age and Nutritional Status Samantha Marcellus, MPH, The University of Iowa Stead Family Children's HospitalValidating the QSight Tandem Mass Spectrometry System for GAA (acid α-glucosidase) and IDUA (α-iduronidase) Enzyme Screening in Dried Blood Spots with a 3 Hour Incubation Time Amy Hietala, MS, Minnesota Department of Health11:00 am – 12:30 pm | Joint Session on QA/QC and Follow-upModerators: Beth Vogel, MS, CGC, New York State Department of HealthAdrienne Manning, Connecticut Department of Public HealthPresentations:Baby Power: Improving Congenital Adrenal Hyperplasia Screening Performance with Neonatal Characteristics Hao Tang, PhD, California Department of Public HealthHemoglobin Variant Reporting in Newborn Screening Kim Hart, MS, LCGC, Utah Department of HealthInvestigation of First Contact with Families Regarding Out-of-Range Newborn Screening Results Allison Wood, Genetic AllianceThe Impossible is Possible: Transforming Alaska's NBS Program Sabra Anckner, RN, BSN, Alaska Division of Public HealthHurricane María: Experience of the Puerto Rico Newborn Screening Program Sulay Rivera, PhD, Puerto Rico Newborn Screening Program2:30 pm – 4:00 pm | Financial, Legal, Ethical, Policy & Social Implications (FLEPSI)Moderators: Susan Tanksley, PhD, Texas Department of State Health ServicesJohn Thompson, PhD, MPH, MPA, Washington State Department of HealthPresentations:Understanding Newborn Screening Financial Models Nisha Quasba, MPH, APHLDifficult Choices, Rewarding Outcomes: Delaware's Newborn Screening Program Michael Cellucci, MD, Nemours AI DuPont Hospital for ChildrenIncluding ELSI Research Questions in Newborn Screening Pilot Studies Aaron Goldenberg, PhD, Case Western Reserve UniversityComparison of Video, App and Standard Consent Processes on Parental Decision Making for Residual Dried Blood Spot Research: A Randomized Controlled Trial Erin Rothwell, PhD, CTRS, University of Utah4:30 pm – 6:00 pm | We All Screen for Two Screens!Moderators: Rachel Lee, PhD, Texas Department of State Health ServicesDarren Michael, PhD, Colorado Department of Public Health and EnvironmentPresentations:The Lonely Newborn Screen: A Study of Linking Algorithms and Why Two Screen State Laboratories Do Not Receive Two Appropriately Timed Screens for All Newborns Brendan Reilly, Texas Department of State Health ServicesAre Two Screens Necessary for Amino Acid, Fatty Acid Oxidation and Organic Acid Conditions? Patricia Hunt, Texas Department of State Health ServicesThe Benefits of a Second Newborn Screen to Detect SCID and Other T-cell Lymphopenias: A Four-Year Review in Washington State Caroline Nucup-Villaruz, MD, Washington State Department of HealthChallenges and Lessons Learned from One Year of X-ALD Newborn Screening in a Two-Screen State John Thompson, PhD, MPH, MPA, Washington State Department of HealthDay 3 - Tuesday, April 98:30 am – 10:00 am | International PerspectivesModerators: R. Rodney Howell, MD, University of Miami School of MedicineJoanne Mei, PhD, Centers for Disease Control and PreventionPresentations:High-Throughput Identification of Hemoglobinopathies & Thalassemias by HRAM/MS Zoltan Lukacs, PhD, Hamburg University Medical Center, GermanyPerformance of a Three-tier (IRT-DNA-IRT) Cystic Fibrosis Screening Algorithm in British Columbia Graham Sinclair, PhD, British Columbia Newborn Screening Program, CanadaIncorporation of CLIR Post Analytical Interpretative Tools in the Evaluation of the Dutch Newborn Screening Results Rose Maase, National Institute for Public Health and the Environment, The NetherlandsHematopoietic Stem Cell Transplantation and Newborn Screening in Developing Countries: MENA Update Issam Khneisser, MS, MBA, Saint Joseph University, LebanonA Novel Collaborative Newborn Screening Approach: Screening Program Located in a Tertiary Pediatric Hospital Clinical Laboratory Rachel Mador-House, MS, CGC, Maritime Newborn Screening Centre, Canada10:30 am – 12:00 pm | Communicating with Families and the PublicModerators: Carol Johnson, University of Iowa Hospitals & ClinicsMary Kleyn, MS, Michigan Department of Health and Human ServicesPresentations:The X (ALD) Factor: Follow-Up and Clinical Perspectives After One Year of Screening in Minnesota Amy Gaviglio, MS, CGC, Minnesota Department of HealthPublic Health Newborn Screening Follow-up for X-linked Adrenoleukodystrophy, Mucopolysaccharidosis Type I, and Pompe Disease: Lessons Learned from a Multipronged Stakeholder Needs Assessment Elise Holmes, MPP, Minnesota Department of HealthEstimates of Treatment Discontinuation During First 3 Years Among Privately Insured US Children Born During 2010-2014 and Diagnosed with Congenital Hypothyroidism Stuart Shapira, MD, PhD, Centers for Disease Control and PreventionTrying Times Call for Trying New Approaches! Expanding Follow-up System Capacity with Existing Resources through New Partnerships and Collaborations to Reduce Loss-to-Follow-up Julie Luedtke, Nebraska Department of Health and Human ServicesMaking Texas Smaller – Finding the Hard-to Find Karen Hess, Texas Department of State Health Services1:30 pm – 3:00 pm | Parent/Patient PanelModerators: Shannon Harrison, RN, BSN, LCCE, Illinois Department of Public HealthLewis Hsu, MD, PhD, University of Illinois at ChicagoPresentations:Assessing the Experience of Parents of Newborns Diagnosed with a Condition through Michigan's Newborn Screening Program Kristy Karasinski, MPH, Michigan Department of Health and Human ServicesFamily Experiences After Diagnosis: An Assessment of Access and Availability of Care, Resources and Support Elise Holmes, MPP, Minnesota Department of HealthParent PanelPam Kowalczyk (adult with PKU and parent of child with PKU)Jill Schindler (parent of child with MPS I - Hurler)Kendra Cole (parent of child with Sickle Cell Anemia)4:00 pm – 5:00 pm | Spinal Muscular AtrophyModerators: Amy Gaviglio, MS, CGC, Minnesota Department of HealthGuisou Zarbalian, MS, MPH, APHLPresentations:Challenges in Revalidation of the TREC qPCR Assay as a Multiplex SCID-SMA Assay Michele Caggana, ScD, New York State Department of HealthOne Year Update: Population Wide Screening for Spinal Muscular Atrophy (SMA, due to a homozygous deletion of exon 7 in SMN1) and Severe Combined Immunodeficiency Andreas Rohrwasser, PhD, MBA, Utah Department of HealthImplementation and One Year of Screening for Spinal Muscular Atrophy: The Minnesota Experience Carrie Wolf, MBS, Minnesota Department of HealthIs it Really "NOT" SMA? Reassurance and Insights from 3rd Tier DNA Sequencing after High-Throughput Newborn Screening for SMA Binod Kumar, PhD, New England Newborn Screening ProgramDay 4 - Wednesday, April 108:30 am – 10:00 am | Molecular Technology and UtilityModerators: Patricia Hunt, Texas Department of State Health Services OluwaFunke Akinsola, APHLPresentations:CYP21A2 Variant Panel as a 2nd Tier for Congenital Adrenal Hyperplasia Newborn Screening: Metrics from the Minnesota Experience Kyriakie Sarafoglou, MD, University of MinnesotaImplementation of IRT-DNA-SEQ Algorithm Improves Cystic Fibrosis Newborn Screening in New York State Denise Kay, PhD, New York State Department of HealthSecond-tier Sequencing Analysis for VLCAD Deficiency in Texas: The First 13 Months D'Andra Luna, Texas Department of State Health ServicesPilot Study for the Implementation of a Multi-Gene SCID Panel in Newborn Screening Colleen Stevens, PhD, New York State Department of HealthDevelopment and Roll-out of a Variant Database for Use by Newborn Screening Programs Jaime Hale, MS, New England Newborn Screening Program10:30 am – 12:00 pm | Conditions Under ConsiderationModerators: Michelle Caggana, ScD, New York State Department of HealthSikha Singh, MHS, PMP, Association of Public Health LaboratoriesPresentations:Management of Iowa's Newborn Screening Panel and Addition of New Conditions Kimberly Noble Piper, RN, BSN, CPH, CPHG, Iowa Department of Public HealthNewborn Screening for Mucopolysaccharidoses: Pilot Studies and Biomarkers Michael Gelb, PhD, University of WashingtonEarly Check: Initial Findings Don Bailey, PhD, RTI InternationalDMDNBS Cloud: Creating the Evidence Base for Duchenne Muscular Dystrophy Newborn Screening Amy Brower, PhD, American College of Medical Genetics and GenomicsEvaluation of a Suitable CK-MM Assay in Newborn Screening for Duchenne Muscular Dystrophy Mei Baker, MD, Wisconsin State Laboratory of Hygiene12:00 pm – 1:00 pm | Special Session National Case-Level Reporting for Newborn Screening: Lessons Learned from Infectious DiseasesDavid Wong, CAPT, MD, US Department of Health and Human ServicesColeen Boyle, PhD, MS, Centers for Disease Control and Prevention It looks like your browser does not have JavaScript enabled. 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