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
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