The symposium schedule is listed below and those presentations with links have been authorized to be posted on this Web site. Duplication is not authorized without the express written permission of the authors. The author and “2010 NBS>S” must be cited once permission is received.
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Monday, May 3, 2010
Pre-Conference Session - Quality Assurance/Quality Control Workshop
Second Tier Testing for Newborn Screening - Enhancements for Performance Metrics
Moderator - Kenneth Pass, Wadsworth Center Gary Hoffman,
Wisconsin State Laboratory of Hygiene
What is a Second Tier Test?
- Kenneth Pass, Wadworth Center
Primary Congenital Hypothyroidism-T4/TSH vs. TSH Only
- Patrick Hopkins, Missouri Public Health Laboratory
Second Tier Testing for CAH Testing-The California Experience
- Fred Lorey, California Department of Public Health
Second Tier Testing for Metabolic Disorders: A Regional Approach
- Marzia Pasquali, ARUP Laboratories
Cystic Fibrosis and Galactosemia: Two Conditions and Two Models for Use of DNA
Markers in the Second Tier of Screening
- Anne Comeau, New England Newborn Screening Program
Second Tier Molecular Testing in the Texas Newborn Screening Program
- Rachel Lee, Texas Department of State Health Services
Development of a Second Tier GC-MS Screening Assay for Organic Acidemias Using
Newborn Screening Dried Blood Spots
- James Lim, Kentucky Department of Public Health
Monitoring PKU and MSUD in One Method from Dried Blood Spots Using LC/MS/MS
- Chunli Yu, Mount Sinai School of Medicine
Is Second Tier Screening for CAH Cost Effective? The Influence of State Laboratory
Testing and Follow-up Practices
- Scott Grosse, Centers for Disease Control and Prevention
Pre-Conference Session - Short-term and Long-term Follow-up
Newborn Screening in the NICU/SCBU: Protecting Our Smallest Infants
Moderator - Judi Tuerck, Northwest Regional Newborn Screening Program
The Day in the Life of a Pre-term Infant
- Christine J. Valentine, Nationwide Children’s Hospital and the Ohio State University
CLSI-I/LA31-A: Newborn Screening for Premature and/or Sick Newborns: Approved
Guidelines
- Julie Miller, Nebraska Department of Health & Human Service
Serial Screening of NICU/SCBU Infants – Not as Overwhelming as One Might Think:
NW Regional Newborn Screening Program’s Experience
- Leanne Rien, Oregon State Public Health Laboratory
Serial Screening of NICU/SCBU Infants – Developing a Three-Part Newborn Screening
Kit
- Leanne Rien, Oregon State Public Health Laboratory
Friendly Feud – Interactive Session
Long-term Follow-up
Moderator - Lois Taylor, Florida Department of Health and Lanetta Jordan,
Memorial Regional Hospital
Retrieval and Short-term Follow-up Feedback Mechanisms in Ontario, Canada
- Jennifer Milburn, Ontario Newborn Screening Program
Enhancing Current Surveillance Systems to Capture Long-Term Outcomes For
Confirmed Newborn Screening Cases: Preliminary Results from a Four-State Pilot
Project
- Cynthia Hinton, Centers for Disease Control & Prevention
Development of a Population-based Surveillance and Tracking System in New York
State for Long-term Follow-up of Children Identified Through Newborn Screening
- Ying Wang, New York State Department of Health
Development of Nutrition Guidelines for Inborn Errors of Metabolism Detected by
MS/MS NBS: An Important Component of Long-term Follow-up
- Dianne Frazier, University of North Carolina
Opening Keynote
- Jim Kelly, Hunter’s Hope Foundation
Newborn Screening Molecular Testing Forum
Enhancing Newborn Screening Through Molecular Testing
- Suzanne Kehoe Cordovado, Centers for Disease Control & Prevention
Advances and Gaps in Newborn Screeing Molecular Testing
- Michele Caggana, New York State Department of Health, Wadsworth Center
Looking Towards the Future of Expanded Molecular Testing in Newborn Screening
- Christopher N. Greene, Centers for Disease Control & Prevention
Quality Assurance Program for Molecular Screening
- Marie Earley, Centers for Disease Control & Prevention
Newborn Screening Molecular Network: A Synergistic Partnership
- Suzanne Kehoe Cordovado, Centers for Disease Control & Prevention
Tuesday, May 4, 2010
Roundtables
Newborn Screening Follow-up and Tracking: Overarching Questions
- Colleen Boyle, Centers for Disease Control and Prevention
IRT/IRT/DNA Methodology for Cystic Fibrosis Newborn Screening
- Susan Tanksley, Texas Department of State Health Services
Session 1 - Health Information Technology(HIT)
Moderator - Mark McCann, Minnesota Department of Health, Public Health Laboratory and
Brad Therrell, Mational Newborn Screening and Genetics Resource center
Newborn Screening, the Health Information Technology Act and Health Information
Exchange
- Alan Hinman, Task Force for Global Health
Adapting the HL7 v2.5.1 Lab Result Message to Carry Newborn Screening Results
- Rebecca Goodwin, National Library of Medicine
Electronic Ordering of Newborn Screening and the Role of Electronic Newborn
Discharge Summary in Delivering NBS Results to Primary Care Providers
- Alan Zuckerman, National Library of Medicine
Implementing Health Information Technology Standards in Pennsylvania’s Newborn
Screening Program
- Carolyn Ellison, Pennsylvania Department of Health and Roger Eaton, New England
Newborn Screening Program
Session 2 - Education
Moderator - Julie Miller, Nebraska Department of Health & Human Services and Natasha
Bonhomme, Genetic Alliance
Training of Nurses Regarding the New Updated CLSI Guidelines for Preterm, Low Birth
Weight and Sick Infants
- Becky Whittemore, Oregon State Public Health Laboratory
Mother’s Experiences with Education about Newborn Screening in Ontario: Implication
for Practice
- Kim Gall, Ontario Newborn Screening Program
Geographical Differences in Pediatricians’ Knowledge of Newborn Screening and
Management of Hemoglobinopathies
- Kirsty McWalter, Hawaii Department of Health Genetics Program
Educational DVD for Parents and Providers on CPT-1 Deficiency
- Thalia Wood, Alaska Department of Health and Social Service
Newborn Screening Wisdom for the Ages: Lessons Learned and Roads Already
Traveled
Moderator - Julie Miller, Nebraska Department of Health & Human Services
Panelists – George Cunningham, Harry Hannon, Kenneth Pass, Judi Tuerck and Bridget
Wilcken
Session 3 - Quality Improvement: Program
Moderator - J. Gerard Loeber, National Institute Public Health (RIVM), The Netherlands
and Michele Lloyd-Puryear, Health Resources and Services Administration
Texas Newborn Screening Performance Measures Project
- Susan Tanksley, Texas Department of State Health Services
Regional Newborn Screening Harmonization Through Quality Improvement
- Barb Schweitzer, North Dakota Department of Health, Kim Turner, University of Iowa
Hospitals and Clinics and Carol Johnson, University of Iowa Hygienic Labortory
Quality Improvement of Short-term Follow-up for Newborn Screening Performed by an
Out-of-State Regional Laboratory
- Arthur Yu, Hawaii Department of Health Genetics Program
Ascertainment of Cystic Fibrosis Cases with False-Negative Newborn Screening
Results
- John Thompson, Washington State Department of Health
Session 4 - Quality Improvement: Laboratory
Moderator - Gary Hoffman, Wisconsin State Laboratory of Hygiene and Carla Cuthbert,
Centers for Disease Control & Prevention
Upcoming Recommendations for Good Laboratory Practices for Biochemical Genetic
Testing and Newborn Screening for Inherited Metabolic Disorders
- Bin Chen, Centers for Disease Control & Prevention
Screening Test Results on Overspotted Filter Papers
- Dennis Freer, PerkinElmer Genetics, Inc.
Proficiency Testing Results for Low Free Carnitine and Hydroxyisovalerylcarnitine by
Tandem Mass Spectrometry: Impact of Laboratory Cutoff Practices
- Victor De Jesus, Centers for Disease Control & Prevention
Enlarging National Newborn Screening Back-up Capacity by Establishing a Network of
Harmonized Newborn Screening Laboratories
- Stanton Berberich, University of Iowa Hygienic Laboratory
Wednesday, May 5, 2010
Roundtables
Harmonization in Testing Unsatisfactory Newborn Screening Specimens
- Patrick Hopkins, Missouri Public Health Laboratory and Joseph Orsini, New York State
Department of Health
Improving the Image of Newborn Screening
- Susan Tanksley, Texas Department of State Health Services and Natasha Bonhonme,
Genetic Alliance
Session 5 - International Perspectives
Moderator - Kenneth Pass, Wadsworth Center and Max Salfinger, Florida Department of
Health
Expanded Newborn Screening by Tandem Mass Spectrometry in Germany, Austria and
Switzerland: Different Rationales for the Selection of Target Disorders in Comparison
to the ACMG Panel
- Zoltan Lukacs, University of Hamburg, Germany
Diagnosis of Low Excretor GA1 by Measuring 3-Hydroxyglutaric Acid in Dried Urine
Spots
- Osama Y. Al-Dirbashi, Ontario Newborn Screening Program, Canada
Cystic Fibrosis Screening in the Netherlands to Go Ahead
- J. Gerard Loeber, National Institute Public Health (RIVM), The Netherlands
Screening for Duchenne Muscular Dystrophy
- Francois Eyskens, PCMA, Belgium
Session 6 - Old Conditions, New Information
Moderator - Cheryl Hermerath, Oregon State Public Health Laboratory and Stuart Shapira,
Centers for Disease Control & Prevention
Rising Incidence of Congenital Hypothyroidism in Massachusetts
- Inderneel Sahai, New England Newborn Screening Program
Ten Year Review of CAH Cases in Washington State Newborn Screening
- Caroline Nucup-Villaruz, Washington State Department of Health
Comparison of Two Newborn Screening Systems for Hemoglobinopathy Identification
- Christine McKeever, Tennessee Department of Health
Sickle Cell Trait Carrier Status Screening – A Report to the Secretary’s Advisory
Committee on Heritable Disorders in Newborns and Children
- Melissa Creary, Centers for Disease Control & Prevention
- Lenee Simon, Health Resources and Services Administration
Session 7 - Candidate Conditions – Severe Combined Immunodeficiency (SCID)
Moderator - Susan Tanksley, Texas Department of State Health Services and Denise
Higgins, Montana Public Health Laboratory
Newborn Screening for Severe Combined Immunodeficiency in Wisconsin
- Mei Baker, Wisconsin State Laboratory of Hygiene
Implementation of a SCID NBS Program Using a Multiplex Assay and an Integrated
Program Approach: Massachusetts Technical and Program Experience
- Anne Comeau, New England Newborn Screening Program
SCID Detection in the Guthrie Specimen by Immunoassay
- David Janik, Wadsworth Center
Development of Reference Materials for Calibration of Quantitative Real-time PCR
Assays Used to Quantify T-cell Receptor Excision Circles in Dried Blood Spots
- Robert Vogt, Centers for Disease Control & Prevention
Session 8 - Candidate Conditions – Lysosomal Storage Disorders (LSD)
Moderator - Robert Vogt, Centers for Disease Control & Prevention and Patrick Hopkins,
Missouri Public Health Laboratory
Advances in Screening for Lysosomal Storage Disorders by MS/MS
- Ron Scott, University of Washington
Automation of Multiplexed Tandem Mass Spectrometry Methods for Screening of
Newborns for Lysosomal Storage Disorders: Pilot Study and Practical Limitations and
Observations
- Joseph Orsini, New York State Department of Health
Laboratory Support at the CDC for Newborn Bloodspot Screening of Lysosomal
Storage Disorders
- Hui Zhou, Centers for Disease Control & Prevention
Digital Microfluidic Platform for Multiplexing LSD Assays in Newborn Screening
- David Millington, Duke University
Thursday, May 6, 2010
Session 9 - Financial, Ethical, Legal and Social Implications (FELSI)
Moderator - Joanne Mei, Centers for Disease Control & Prevention and Fred Lorey,
California Department of Public Health
Michigan BioTrust for Health: Community Engagement Methods and Results
- Carrie Langbo, Michigan Department of Community Health
Parents are Asking “What is the Government Doing with my Baby’s DNA?” -
Washington State’s Experience with Residual Newborn Screening Blood Spots
- Sheila Weiss, Washington State Department of Healthy
National Policy Regarding:
The Retention and Use of Residual Dried Blood Spot Specimens after Newborn
Screening Carrier Screening: Whom to Test? When to Test?
- R. Rodney Howell, Chair, Secretary"s Advisory Committee on Heritable Disorders in
Newborns and Children
Session 10 - Clinical Outcomes
Moderator - Harry Hannon, Centers for Disease Control & Prevention and Sue Berry,
University of Minnesota
Gestational Age, Birthweight and Month at Collection Impact Analytes Collected for
Newborn Screening
- Kelli Ryckman, University of Iowa
Mandated Coverage of Metabolic Foods and Formulas: A Decade of Experience
- Sarah Scollon, Hawaii Department of Health Genetics Program
Parent Survey of Insurance Coverage of Medical Foods for Children with Metabolic
Conditions
- Mary Kay Kenney, Health Resources and Services Administration
The Newborn Screening Translational Research Network (NBSTRN): An NICHD/NIH
Initiative
- Amy Hoffman, American College of Medical Genetics
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