2014 NBSTRN Network Meeting Speaker Presentations

The NBSTRN had a wonderful turn out for the 2014 NBSTRN Network Meeting, which took place on September 21st and the 22nd at the Hyatt Regency Hotel in Bethesda, MD. 

Of the 91 people registered, 83 were able to join us. We learned about the various tools and resources available through the NBSTRN, heard from grantees working with the NBSTRN tools and had the opportunity to learn about ongoing and future pilots in newborn screening. In addition, we heard presentations on the ethical and legal implications associated with doing newborn screening as well as the future of next generation sequencing. To conclude the meeting, we had the opportunity to hear from federal partners who told us about many different research opportunities. The presentation slides from the speakers who presented at the Network Meeting can be found by clicking the links below: 

Aileen Baldwin  - Retrospective Assessment of Prenatal Alcohol Exposure by Detection of Phosphatidylethanol in Stored Dried Blood Spot Cards

Aaron Goldenberg - Assessing the Programmatic and Ethical Challenges of “Genomic NBS”

Rohan Hazra - NIH Data Sharing

Ingrid Holm - Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT): Genomic Sequencing and Newborn Screening Disorders U19 Projects 

Kellie Kelm - FDA Regulation of In Vitro Diagnostic Devices Used in Investigations 

Barbara Koenig - The U19 ELSI Network: Addressing the Use of Sequencing Technologies in NBS

Thomas Langan - Potential of The World Wide Registry and the New York State Krabbe Consortium to Advance Krabbe Research

Ning Rosenthal - Collecting Long-Term Follow-Up Data at Primary Care Settings using LPDR’s REDCap Interface

Patricia Hall - Current and Future Roles of Region 4 Post-Analytical Tools in Georgia Newborn Screening

Piero Rinaldo - CLIR/R4S 2.0

Sue Berry - Inborn Errors of Metabolism Collaborative

Kathy Swoboda - Update on Multistate Pilot NBS Study for SMA: Lessons Learned and Steps Forward

Tiina Urv - NBS at NICHD 2014-2015

Melissa Wasserstein - Lysosomal Storage Disorders Collaborative

Michael Watson - NBSTRN Next Steps

Peter White - Next-Generation LPDR: Harvesting Genomic Data

Anastasia Wise - NHGRI Initiatives and Updates

Published On: 
Thursday, November 13, 2014