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 “2008 NBS>S” must be cited once permission is received.
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Monday, November 3, 2008
Quality Management System in Newborn Screening Laboratories – Pre-Conference
Sponsored by PerkinElmer, Inc.
Panel Discussion – MS/MS Issues and Solutions: Open Forum
Moderator - Gary Hoffman, Wisconsin State Laboratory of Hygiene
Joanne Mei, Centers for Disease Control and Prevention
Donald Chace, Pediatrix Screening, Inc.
Lawrence Sweetman, Insitute of Metabolic Disease
Panel Discussion – MS/MS Applications Beyond Routine Screening: Open Forum
Moderator – Kenneth Pass, Wadsworth Center
Dietrich Matern, Mayo Clinic College of Medicine
Victor De Jesus, Centers for Disease Control and Prevention
Dadong Xu, California Department of Public Health
Short-term and Long-term Follow-up – Pre-Conference
Sponsored by PerkinElmer, Inc.
Moderators – Julie Miller, Nebraska Department of Health and Human Services
Lori Williamson, University of Oklahoma Health Sciences Center
Interactive Discussion of Case Scenarios, Definitions and Timelines
- Sara Copeland, University of Iowa Children’s Hospital
- Judi Tuerck, Oregon Health & Science University
NYMAC Newborn Screening Screen Positive Follow-up Protocols
- Katharine Harris, Wadsworth Center
Increasing Family Participation in Newborn Screening Programs
- Kimberly Noble Piper, Iowa Department of Public Health
Survey of Performance Measures Used by Newborn Screening Programs
- Simran Tiwana, Texas Department of State Health Services
Update from the Secretary’s Advisory Committee Subcommittee on Follow-up
- Colleen Boyle, Centers for Disease Control and Prevention
Newborn Screening Information Systems: Region IV Genetics Collaborative Priority
Project
- Susan Berry, University of Minnesota
Providing Nutrition Services to Patients: Access to Diets and Dietitians
- Kathryn Camp, Walter Reed Army Medical Center
Long-term Follow-up Services and Outcomes: Oklahoma’s Experience
- Jennifer Allen, Oklahoma Department of Health
Opening Session
Moderator – Susan Tanksley, Texas Department of State Health Services
Welcome to Texas and San Antonio
- Susan Neill, Texas Department of State Health Services
Keynote
Life of Newborn Screening: Past, Present and Future
- Harry Hannon, Centers for Disease Control and Prevention
- Brad Therrell, National Newborn Screening and Genetics Resource Center
Tuesday, November 4, 2008
Roundtables
A Roundtable Discussion on Health Insurance Reimbursement Issues for Medically
Prescribed Foods and Nutraceutical Agents: A National Dilemma
- Susan Berry, University of Minnesota
A Roundtable Discussion of Hemoglobinopathy Technologies Currently Available or in
Development
Moderator – Susan Tanksley, Texas Department of State Health Services
- Jeff Seidel, Bio-Rad Laboratories
- Petri Hutinen, PerkinElmer, Inc.
- Genevieve Hennache, Sebia Electrophoresis
- Diane Chritton, Trinity Biotech
Session 1 – New and Emerging Technologies in the Laboratory 1
Moderators - Cheryl Hermerath, Oregon Public Health Laboratory
Robert Vogt, Centers for Disease Control and Prevention
Multiplexing for Newborn Screening: Reports on CH, CF, CH and CF and Hematocrit
- Kenneth Pass, Wadsworth Center
Screening for CAH by MS/MS as a Primary Screen
- Robert Thompson, Cadham Provincial Laboratory
Effective and Affordable 1st Tier Newborn Screening for Tyrosinemia Type 1
- Dietrich Matern, Mayo Clinic College of Medicine
Session 2 – New and Emerging Technologies in the Laboratory 2
Moderators - Brad Therrell, National Newborn Screening and Genetics Resource Center
Kenneth Pass, Wadsworth Center
Molecular Confirmation of Disorders Detected by Newborn Screening: What and When to
Request
- Madhuri Hegde, Emory University
Next-Generation Sequencing, Other New Molecular Technologies and Newborn
Screening
- Patricia Mueller, Centers for Disease Control and Prevention
Digital Microfluidics: A Novel Platform for Multiplexed Detection of Lysosomal Storage
Diseases with Potential for Neonatal Screening
- David Millington, Duke University
Luncheon
Moderator – Brad Therrell, National Newborn Screening and Genetics Resource Center
Newborn Thyroid Screening – Development and History
- Delbert Fisher, University of California, Los Angeles
Session 3 – Candidate Conditions for Expanding Newborn Screening Panel
Moderators - Coleen Boyle, Centers for Disease Control and Prevention
Joseph Orsini, Wadsworth Center
Newborn Screening for Krabbe Disease in New York State: First Two Years
- Carlos Saavedra-Matiz, Wadsworth Center
Neonatal Screening for Pompe Disease: A Feasibility Study
- Zoltan Lukacs, Hamburg University Medical Center
Newborn Screening for Fragile X Syndrome: Current Perspectives, Issues and Activities
- Donald Bailey, RTI International
Newborn Screening for Peroxisomal Disorders
- Sylvia Tortorelli, Mayo Clinic College of Medicine
Session 4 – Quality Improvement Throughout the Newborn Screening System
Moderators - Susan Berry, University of Minnesota
Susan Tanksley, Texas Department of State Health Services
The Heartland Newborn Screening Back-up Testing Project: Quality Assurance Findings
- Patrick Hopkins, Missouri Public Health Laboratory
MSGRCC Metabolic Newborn Screening Long-term Follow-up Study: A Collaborative
Multi-state Approach to Newborn Screening Outcome Research
- Erica Wright, The Children’s Hospital – Denver
Improving Newborn Screening Performance: The Mayo Clinic Experience
- Dietrich Matern, Mayo Clinic College of Medicine
Clinical and Laboratory Standards Institute “Newborn Screening Guidelines for
Premature and/or Sick Newborns”: An Update
- Julie Miller, Nebraska Department of Health and Human Services
Wednesday, November 5, 2008
Ad Hoc Session
Newborn Screening Contingency Planning Panel Discussion
- Jane Getchell, Delaware Public Health Laboratory, moderator
- Susan McClure, Centers for Disease Control and Prevention
- Michael Watson, American College of Medical Genetics
- Stanton Berberich, University of Iowa Hygienic Laboratory
Session 5 – Patient Perspectives of Newborn Screening
Moderators - Julie Miller, Nebraska Department of Health and Human Services
Lianne Hasegawa, Hawaii Department of Health
Development of a Parent Education Strategy for Expanded Newborn Screening in
Ontario: A Survey of Prenatal Educators’ Practices and Perspectives
- Mireille Cloutier, Children’s Hospital of Eastern Ontario
Parent Support of Storage and Use of Newborn Screening Samples for Research
Purposes
- Beth Tarini, University of Michigan
Consumer Focused Newborn Screening: A Quantitative Approach
- Natasha Bonhomme, Genetic Alliance
Panel with Patients Who Have Transitioned to Adulthood
Session 6 – Other Financial, Ethical, Legal and Social Implications
Moderators - Susan McClure, Centers for Disease Control and Prevention
Natasha Bonhomme, Genetic Alliance
Diagnosing Cystic Fibrosis in Newborns Through Screening: Still a Bit of an Odyssey
- John Thompson, Washington State Department of Health
Newborn Screening for Tyrosinemia Type 1: Benefit-cost Ratios and Underlying Morbidity
and Mortality Under Three Screening Models
- Jessica Dolle, Washington State Department of Health
Genetic Health Professionals’ Attitudes About Fragile X Newborn Screening
- Kruti Acharya, University of Chicago
Perspectives on the Newborn Screening Saves Lives Act
- Susan McClure, Centers for Disease Control and Prevention
- Kelly Leight, CARES Foundation, Inc.
Session 7 – Access to Treatment and Management
Moderators - Judi Tuerck, Oregon Health & Science University
Scott McLean, Wilford Hall Medical Center
Developing Diagnostic Guidelines for Conditions in the Newborn Screening Panel
- David Kronn, New York Medical College
Role of Genetic Counselors in the Newborn Screening System: The Oklahoma
Experience
- Lori Williamson, University of Oklahoma Health Sciences Center
A Short-term Follow-up Data System
- Lisa Feuchtbaum, California Department of Public Health
Centralized Tracking by Newborn Screening Programs Facilitate Follow-up with Multiple
Specialty Centers
- Anne Comeau, New England Newborn Screening Program
Session 8 – Health Information Technology: Applications and Advancements
Moderators - Mark McCann, Minnesota Public Health Laboratory
Lucy Fossen, South Dakota Department of Health
Integration of the Kentucky Vital Events Tracking Systems (KVETS) with the Laboratory
Information System (LIS) of the Kentucky Newborn Screening Program
- William Baker, Kentucky Public Health Laboratory
Integrating Information Management in Alaska – Newborn Hearing Screening and
Newborn Bloodspot Screening
- Lura Daussat, OZ Systems
- Thalia Wood, Alaska Division of Public Health
Reporting Lab Results for Newborn Dried Bloodspot Results Using an HL7 Message
- David Ross, Public Health Informatics Institute
The ONC Newborn Screening Use Case and New Roles for HIT in Screening Programs
- Alan Zuckerman, Georgetown University Medical Center
- Stephen Downs, Regenstrief Institute
Thursday, November 6, 2008
Session 9 – Global Perspectives of Newborn Screening
Moderators - Gerard Loeber, RIVM, Bilthoven, The Netherlands
Pranesh Chakraborty, Children’s Hospital of Eastern Ontario, Canada
Development of a Global Neonatal Screening Database
- Gerard Loeber, RIVM, Bilthoven, The Netherlands
Screening for Metabolic Diseases in Public Health System in Brazil
- Paula Vargas, Technical Advisory Committee in Newborn Screening, Brazil Health
Ministry
Expansion of Newborn Screening in Ontario, Canada: Lessons Learned in the First Two
Years
- Sari Zelenietz, Children’s Hospital of Eastern Ontario, Canada
Basic Hypothyroidism Newborn Screening Information for Policy Makers in Developing
Newborn Screening Programs in the Middle East and North Africa
- Brad Therrell, National Newborn Screening and Genetics Resource Center
Session 10 – Late Breaking Topics
Moderators - Harry Hannon, Centers for Disease Control and Prevention
Donna Williams, Texas Department of State Health Services
Alpha-1 Antitrypsin Deficiency
- Robert A. Sandhaus, National Jewish Health
Newborn Screening for Severe Combined Immunodeficiencies (SCID) – A 2008
Wisconsin Perspective
- Ronald Laessig, Wisconsin State Laboratory of Hygiene
Newborn Screening for Severe Combined Immunodeficiencies (SCID) in Navajo Indians
- Jennifer Puck, University of California, San Francisco
Development and Validation of a Multiplex Assay for Identification of Infants with SCID
- Anne Comeau, New England Newborn Screening Program
Newborn Screening for Severe Combined Immune Deficiency (SCID): A Perspective
from the CDC Newborn Screening Translation Research Initiative
- Robert Vogt, Centers for Disease Control and Prevention
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