2016 NBSTRN Network Meeting Presentations

Thank you to everyone who was able to attend and participate at the Network Meeting on September 8-9, 2016 at the Hamilton Crowne Plaza in Washington, DC. We hope that you found the meeting informative and worthwhile. Of the 101 people registered, 85 were able to join us in person. 

In order to make next year’s meeting even more successful we request that you fill out this post-evaluation form. We thank you in advance for your comments and suggestions.

Below you will find presentations from the speakers and panelists at the 2016 NBSTRN Network Meeting:

NICHD Welcome- Melissa Parisi 

NBSTRN Overview- Michael Watson 

Sickle Cell Disease Association of American's HRSA-funded Newborn Screening Grant Update - Kim Smith- Whitley 

Newborn Screening for Pompe Disease and New York State: Outcomes and the Role of Long-Term Follow-Up- Beth Vogel 

The North Carolina MPS I Newborn Screening Pilot- Cynthia Powell

Maximizing Pilot Studies- Michael Watson 

NSIGHT Common Data Elements: Where We Have Been, and Where We Are Going?- Julie Cakici 

Regional Collaborative (RC) Long-Term Follow-Up (LTFU) Workgroup: Updates on Missouri's Pilot of the Longitudinal Pediatric Data Resource (LPDR) Public Health Tool- Sharmini Rogers 

Updates on the Process of Evidence Review for the ACHDNC- Alex Kemper 

Updates on the Diagnosis and Treatment of Adrenoleukodystrophy- Gerald Raymond

Implementing Rapid Molecular Diagnosis in Newborn Metabolic Conditions- Curt Scharfe 

Engaging Diverse Communities to Inform Newborn Screening and Biobanking Policies- Julie Harris-Wai          

Common Rule and HIPAA Considerations for Researchers- Barbara Cammarata

Public Engagement- Natasha Bonhomme

NBS Candidate Condition ELSI Framework- Jeffrey Brosco

Duchenne Newborn Screening in the U.S.- Michele Lloyd- Puryear 

Big (Genomics) Data: Advances in Network and Computational Genomics Engineering- Stephen Sherry 

Harnessing Dynamic Data for Newborn Screening Research- Pete White 

Updates from NICHD- Della Hann

NCATS Translational Medicine Funding Opportunities- Tiina Urv 

Published On: 
Wednesday, September 28, 2016