Newsroom

Newsletters
News and Events
Presentations
Publications
Spotlight Researchers
Webinars

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

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

Funding Opportunity Announcement: Natural History of Disorders Indentified by Newborn Screening (R01)

Dr. Celia Kaye, MD, PhD

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

2015 NBSTRN Network Meeting Presentations

Dr. Bradford L. Therrell, PhD

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

Dr. Scott Shone, PhD

June 2015 SCID National Monthly Call

May 2015 SCID National Monthly Call

Dr. Don Bailey, PhD, MEd

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

NICHD Presolicitation Notice: Newborn Screening Pilot Studies

Photo of Bob Currier, PhD

Bob Currier, PhD

January SCID National Monthly Call

Jennifer Puck, MD

Ingrid Holm, MD, MPH

November 2014 SCID National Monthly Call

2014 NBSTRN Network Meeting Speaker Presentations

Kathryn J. Swoboda, M.D.

William Wilcox, M.D., Ph.D.

Roshini Abraham, Ph.D.

Michele Caggana, ScD, FACMG

New Initiatives Announcement

Cynthia Powell, M.D., M.S.

NICHD Request for Proposal: Newborn Screening Pompe Pilot Study

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.

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.

Parental Permission for Pilot Newborn Screening Research: Guidelines From the NBSTRN

Dietrich Matern, M.D.

ACMG is Awarded Five Year, $12.5 Million Dollar Contract Renewal to Continue Important Efforts in Newborn Screening

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

Photo of Dr. Baker

Mei Baker, MD, FACMG

Photo of Dr. Lorey

Fred Lorey, PhD

Photo of Dr. Comeau

Anne Marie Comeau, PhD

Photo of Dr. Hannon

Dr. Harry Hannon

NBSTRNetwork Meeting Presentations

Funding Opportunity Announcement: Methods Development

Piero Rinaldo, MD, PhD

After 50 Years, Newborn Screening Continues to Yield Public Health Gains

Delaware Celebrates Newborn Screening Program

Newborn screening 50 years later: access issues faced by adults with PKU

Photo of Dr. Levy

Harvey L. Levy, MD

Research and Development Opportunity in Newborn Screening

New RFA: Screening Improvement Program from the Cystic Fibrosis Foundation

Photo of Dr. Howell

Photo of Robert Guthrie

Robert Guthrie, MD, PhD

Iowa: Advancing Newborn Screening

Funding Opportunity Announcement: Integrating Newborn Screening

Texas Announces NBS Clinic for Primary Immunodeficiency Disorders

VRDBS Press Release

"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

Pediatrician's Role in Nutritional Management for Patients with IMD

NHGRI, NICHD New Grant Program for Newborn Sequencing Screening

"The Medical Home is Vital for Quality Newborn Screening" by: R. Rodney Howell, M.D.

PKU Scientific Review Conference: February 22-23, 2012

Workshop on Natural History Studies of Rare Diseases

VRDBS Online Training and Demos

Global Rare Disease Patient Registry and Data Repository

Critical Congenital Heart Disease Newborn Screening Demonstration Program

Newborn Screening in the Genomic Era: Setting a Research Agenda

HHS Secretary Adopts New Recommendation on Newborn Screening

SACHDNC Presents New Recommendations for Storing DBS

NBSTRN Next Generation Meeting June 16-17, 2011

Funding Opportunity Announcements and Notices