The NBSTRN Coordinating Center staff has given numerous presentations about our efforts to professional organizations. We feel it is very important to make the public and newborn screening community aware of resources and services available and also to positively promote newborn screening programs and research that supports those programs.

If you would like a NBSTRN staff member to present at one of your upcoming meetings please contact us at [email protected].

Selected Presentations:

• Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment. Amy Brower, PhD, May 13, 2010, presented to Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
• NBSTRN Update. Amy Hoffman, MPH, December 1, 2010, presented to New England Genetics Collaboratives.
• Utilization of the Newborn Screening Translational Research Network to Advance Research and Clinical Applications in Lysosomal Storage Disorders. Amy Brower, PhD, Amy Hoffman, MPH, Barry Thompson, MD, and Michael Watson, PhD. February 16, 2011, presented to 7th Annual WORLD Symposium.
• Planning For Long-Term Follow-Up Data Collection after Newborn Screening to Advance Research and Improve Service Delivery and Health Outcomes. Susan Berry, MD and Amy Brower, PhD, March 18, 2011, presented to ACMG Annual Clinical Genetics Meeting.
• NBSTRN and VRDBS Update. Amy Hoffman, MPH. March 19, 2011, presented to ACMG Annual Clinical Genetics Meeting.

Presentations:

• Brower for ACHDNC 05 13 10
• NBSTRN LTFU for ACMG
• NECG NBSTRN Update December 1, 2010