2015 NBSTRN Network Meeting Presentations

Thank you to all who participated in making this meeting a successful event! We had a wonderful turnout for our Network Meeting on September 10th and 11th. Of the 115 people registered, 98 were able to join us in person. 

On our first day we learned from grantees using NBSTRN tools and resources 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 newborn screening after the enactment of the Newborn Screening Saves Lives Reauthorization Act of 2014. On our second day, we had the opportunity to learn about new topics in the public health and newborn screening field as well as new initiatives from federal partners. 

Below you will find presentations from the speakers and panelists at the 2015 NBSTRN Network Meeting:

NICHD Welcome - Melissa Parisi

NBSTRN Overview - Michael Watson

Can Pediatricians Provide Case-Management and Long-Term Follow-Up Data for their Patients with PCH?  - Emily Bezar

NSIGHT Projects Update - Cynthia Powell

Inborn Errors of Metabolism Collaborative: Long-Term Follow-Up to Develop Evidence-Based Newborn Screening and Management Strategies for Inborn Errors of Metabolism - Susan Berry

Genetic and Metabolic Contributions to Congenital Hypothyroidism- Kelli Ryckman

Use of Dried Blood Spots for Detection of Prenatal Alcohol Exposure - Aileen Baldwin

U.S. Duchenne Newborn Screening Landscape - Annie Kennedy

Missouri Lysosomal Storage Disorders Screening and Follow-up for Pompe, Gaucher, Fabry and MPS-1 and Krabbe Disorders- Sharmini Rogers

Potential pilots: Pipeline to RUSP- Alex Kemper

Newborn Screening Saves Lives Act - Cynthia Pellegrini

Newborn Screening Saves Lives Reauthorization Act of 2014- Section 12 Overview - David Orren

Obtaining Consent for Dried Blood Spot Research: A Program PerspectiveAmy Gaviglio

Pilot Screening: Informed Consent, Screening for LSDs- Joseph Orsini

The Michigan BioTrust for Health: An Approach to Collecting Informed Consent for the Research Use of Dried Blood Spots - Carrie Langbo

Parental Consent for Sample Storage and Research - Susan Tanksley

Summary and Discussion - Tiina Urv

Early CheckTM: Rationale and Progress Toward a Voluntary Newborn Screening Program - Don Bailey

NCC/RCs: Envisioning a System that Improves Access to Genetic Services- Celia Kaye

New York State Update: ALD Screening - Joe Orsini

CLIR 2.0: A mini pilot study for Krabbe, Pompe, MPS-1, and X-ALD - Piero Rinaldo

​Current Research at NICHD - Tiina Urv

Precision Medicine - Laura Lyman Rodriguez

FDA Regulation of In Vitro Diagnostic Devices Used in Investigations - Elizabeth Mansfield


Published On: 
Friday, September 25, 2015