2017 NBSTRN Network Meeting Presentations
2017 NBSTRN Network Meeting Agenda
Kim Smith-Whitley, MD
Beth Tarini, MD, MS
Jennifer Kwon, MD, MPH
Beth Vogel, MS, CGC
Anthony Steyermark, PhD
2016 NBSTRN Network Meeting Presentations
2016 NBSTRN Network Meeting Agenda
Gerald Vockley, MD, PhD
Dr. Rani Singh, PhD
ELSI Advantage
Ms. Carrie Langbo, MS, CGC
Funding Opportunity Announcement: Newborn Screening Implementation Program Regarding Conditions Added to the Recommended Uniform Screening Panel (RUSP)
Priya S. Kishnani, MD, MB BS
Newborn Screening Researcher Needs Assessment
Newborn Sequencing of the Future: Genomes, Medicine, and Ethics
John Lantos, MD
Dr. Kathryn L. Hassell
January 2016 Newsletter
Funding Opportunity Announcement: Natural History of Disorders Indentified by Newborn Screening (R01)
December 2015 Newsletter
Dr. Celia Kaye, MD, PhD
November Newsletter
Nancy S. Green, MD
OHRP Releases Webinar Series on the Common Rule
October 2015 SCID National Call
OHRP Announces Public Town Hall Meeting on Federal Policy for the Protection of Human Subjects NPRM- October 20
Dr. Alex Kemper, MD, MPH, MS
October 2015 Newsletter
2015 NBSTRN Network Meeting Presentations
Dr. Bradford L. Therrell, PhD
September 2015 Newsletter
2015 NBSTRN Network Meeting Agenda
HHS Announces Proposal to Improve Rules Protecting Human Research Subjects
August SCID National Call
Advisory Committee on Heritable Disorders in Newborns and Children Meeting- August 27 & 28
2015 NBSTRN Network Meeting - September 10th & 11th Registration
July 2015 SCID National Monthly Call
Preliminary Guidance Related to Informed Consent for Research on Dried Blood Spots Obtained Through Newborn Screening
July 2015 Newsletter
Dr. Scott Shone, PhD
June 2015 SCID National Monthly Call
May 2015 SCID National Monthly Call
Dr. Don Bailey, PhD, MEd
June 2015 Newsletter
Long-Term Follow-Up in Newborn Screening: An Update on ACMG's Work on the NBSTRN and NCC
Newborn Screening for Severe Combined Immune Deficiency (SCID)
Utilization of the Newborn Screening Translational Research Network (NBSTRN) to Facilitate Implementation of Severe Combined Immune Deficiency (SCID) Newborn Screening
Aaron Goldenberg, PhD, MPH
May 2015 Newsletter
NICHD Presolicitation Notice: Newborn Screening Pilot Studies
Bob Currier, PhD
March 2015 Newsletter
January SCID National Monthly Call
January 2015 Newsletter
Jennifer Puck, MD
Ingrid Holm, MD, MPH
December 2014 Newsletter
November 2014 Newsletter
November 2014 SCID National Monthly Call
2014 NBSTRN Network Meeting Speaker Presentations
Kathryn J. Swoboda, M.D.
William Wilcox, M.D., Ph.D.
October 2014 Newsletter
Roshini Abraham, Ph.D.
September 2014 Newsletter
August 2014 Newsletter
Michele Caggana, ScD, FACMG
New Initiatives Announcement
July 2014 Newsletter
June 2014 Newsletter
Cynthia Powell, M.D., M.S.
NICHD Request for Proposal: Newborn Screening Pompe Pilot Study
May 2014 Newsletter
Dr. Stephen Kingsmore, B.Sc., M.B., Ch.B., B.A.O.
NICHD Presolicitation Notice: Newborn Screening Pompe Pilot Study
Michelle Huckaby Lewis, M.D., J.D.
March/April Newsletter
ACMG Updates Recommendation on "Opt-Out" for Genome Sequencing Return of Results
Funding Opportunity Announcement: Pilot Newborn Screening Studies of Novel Technologies in a High Throughput Environment
ACMG Renews Partnership with 5AM for its NICHD Newborn Screening Contract
Parental Permission for Pilot Newborn Screening Research: Guidelines From the NBSTRN
Roger Eaton, Ph.D.
February 2014 Newsletter
Dietrich Matern, M.D.
November 2013 Newsletter
Ken Pass, M.D.
ACMG is Awarded Five Year, $12.5 Million Dollar Contract Renewal to Continue Important Efforts in Newborn Screening
October 2013 Newsletter
Susan Berry, M.D.
Translational Research in Newborn Screening: Development of Informatics Tools to Support Longitudinal Research and Accelerate Transformation in Clinical Practice
Utilization of the Newborn Screening Translational Research Network to Advance Research and Clinical Applications in Lysosomal Storage Disorders
Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment
Planning For Long-Term Follow-Up Data Collection after Newborn Screening to Advance Research and Improve Service Delivery and Health Outcomes
NBSTRN Program Update
Newborn Screening ACT Sheet Severe Combined Immunodeficiency (SCID) and Conditions Associated with T Cell Lymphopenia
Session 1: Introduction and Overiew of NBS and Research
Session 2: Ownership and Control of Specimens
Session 3: Protection of Privacy
Session 4: Protection of Human Subjects
Session 5: Ownership and Control of Research Results
Session 6: Summary of Core Issues
August 2013 Newsletter
Mei Baker, MD, FACMG
July 2013 Newsletter
Fred Lorey, PhD
June 2013 Newsletter
May 2013 Newsletter
Anne Marie Comeau, PhD
Dr. Harry Hannon
NBSTRNetwork Meeting Presentations
Funding Opportunity Announcement: Methods Development
April 2013 Newsletter
Piero Rinaldo, MD, PhD
After 50 Years, Newborn Screening Continues to Yield Public Health Gains
Delaware Celebrates Newborn Screening Program
March 2013 Newsletter
February 2013 Newsletter
Newborn screening 50 years later: access issues faced by adults with PKU
Harvey L. Levy, MD
Research and Development Opportunity in Newborn Screening
New RFA: Screening Improvement Program from the Cystic Fibrosis Foundation
Dr. Rod Howell
Robert Guthrie, MD, PhD
Iowa: Advancing Newborn Screening
January 2013 Newsletter
December 2012 Newsletter
Funding Opportunity Announcement: Integrating Newborn Screening
Texas Announces NBS Clinic for Primary Immunodeficiency Disorders
November 2012 Newsletter
October 2012 Newsletter
VRDBS Press Release
September 2012 Newsletter
"Archived Guthrie Cards Find a New Purpose"
Informational/Technical Assistance Meeting for RFA-HD-13-010
New Funding Opportunity for Genomic Sequencing and NBS Disorders
August 2012 Newsletter
Pediatrician's Role in Nutritional Management for Patients with IMD
July 2012 Newsletter
June 2012 Newsletter
NHGRI, NICHD New Grant Program for Newborn Sequencing Screening
"The Medical Home is Vital for Quality Newborn Screening" by: R. Rodney Howell, M.D.
May 2012 Newsletter
PKU Scientific Review Conference: February 22-23, 2012
Workshop on Natural History Studies of Rare Diseases
VRDBS Online Training and Demos
April 2012 Newsletter
March 2012 Newsletter
Global Rare Disease Patient Registry and Data Repository
February 2012 Newsletter
January 2012 Newsletter
December 2011 Newsletter
Critical Congenital Heart Disease Newborn Screening Demonstration Program
Newborn Screening in the Genomic Era: Setting a Research Agenda
November 2011 Newsletter
October 2011 Newsletter
HHS Secretary Adopts New Recommendation on Newborn Screening
September 2011 Newsletter
SACHDNC Presents New Recommendations for Storing DBS
August 2011 Newsletter
NBSTRN Next Generation Meeting June 16-17, 2011
Funding Opportunity Announcements and Notices