Newborn Screening Translational Research Network Goals of the Hunter Kelly Newborn Screening Program Identify, develop and test the most promising technologies.

Slides:

Advertisements

Similar presentations

Health Resources and Services Administration Maternal and Child Health Bureau Health Resources and Services Administration Maternal and Child Health Bureau.

Advertisements

4 th Meeting of the EC International Dialogue on Bioethics Copenhagen, June 19 th, 2012 Large research and medical databases in clinical and research multi-centred.

Day 2 You receive 2 reports on your desk –The first describes the possibility of expanding the states newborn screening panel to include Severe Combined.

The Diagnostic Laboratory ……the ideal system……. Molecular Genetics Diagnostic Laboratory Exciting area of medical pathology Need to continually up-date.

Rockefeller Phenotyping Initiative Translational Key Function Committee 8/3/2010 Laboratory of Blood and Vascular Biology Laboratory of Human Genetics.

NBS for SCID: State Status NBSTRN Update Michael Watson.

Methods repositories use to protect subjects Roger Aamodt, Ph.D. Resources Development Branch, National Cancer Institute.

NBSTRN Update NCC/RC PI/PD Meeting November 19, 2010 Michael Watson.

Treuman Katz Center for Pediatric Bioethics Conference Newborn Screening: The Future Revolution Beth A. Tarini, MD, MS Assistant Professor Child.

Recent Expansion of Newborn Screening R. Rodney Howell, M. D. Professor of Pediatrics Miller School of Medicine University of Miami Founding Chair Secretary's.

Integration of Child Health Information Systems (CHIS) Public Health Data Standards Consortium March 2004 Deborah Linzer, MS MCHB/Genetic Services Branch.

Sara Copeland, MD Department of Health and Human Services

In Collaboration with NewSTEPs: Data collection efforts at the national level for newborn screening quality improvement Marci K Sontag, PhD NewSTEPs (Newborn.

An Overview of eResearch Activities in Australia Paul Davis, GrangeNet Jane Hunter, Uni of Qld.

NCC Long-Term Follow-Up Project and the NBSTRN CC November 17, 2009 Amy Hoffman, MPH Amy Brower, PhD Project Manager, NBSTRNProject Manager, NCC LTFU.

Maternal and Child Health Bureau Partnering to Achieve Community Service Systems for CSHCN Merle McPherson, MD, MPH New Leaders Orientation.

October 19, 2010 Steven Hirschfeld, MD, PhD Julia Slutsman, PhD

Building Public Health / Clinical Health Information Exchanges: The Minnesota Experience Marty LaVenture, MPH, PhD Director, Center for Health Informatics.

Erica Allis United Nations Environment Programme Eleventh Caribbean Conference on Sustainable Tourism Development May 9 th -13 th St. Michael, Barbados.

Research Bioethics Consultation: More potential than sequencing genomes Benjamin S. Wilfond MD Seattle Children’s Hospital Treuman Katz Center for Pediatric.

CRC Interactive Voice Response System Interactive Surveys, Gathering & Disseminating Data How your study can benefit from this CRC Resource (Carlos Orozco,

Development Principles PHIN advances the use of standard vocabularies by working with Standards Development Organizations to ensure that public health.

Kathryn Camp, M.S., R.D., CSP Consultant to the Office of Dietary Supplements National Institutes of Health Secretary’s Advisory Committee on Heritable.

National Center for Environmental Health Centers for Disease Control and Prevention Suzanne Cordovado, Ph.D. Team Lead, Molecular Quality Improvement Program.

Secretary’s Advisory Committee on Heritable Disorders of Newborns and Children September 22, 2011 Newborn Screening Translational Research Network (NBSTRN)

Lisa Denney, MPH HRPP Assistant Director Melanie Mace, MA HRPP Education and Training Coordinator Bill Woods, PhD CAPS Policy and Ethics Core November.

IMPROVING QUALTY OF CARE FOR CHILDREN TROUGH HEALTH IT Tennessee Project for Children with Special Health Care Needs AHRQ Annual Meeting September 26,2007.

CHILD HEALTH PROFILE FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS AAP Annual Meeting Council on Clinical Information Technology-October 28,2007 Carmen B.

Treuman Katz Center for Pediatric Bioethics Conference Banking Biological Samples for Pediatric Research Jeffrey R. Botkin, M.D., M.P.H. Professor.

Minding the Biobank Consent Gaps: Could a web-based informed consent portal help address the awkwardness surrounding “legacy” biobanks? Daniel Thiel Department.

Update on Newborn Screening Use Case Advisory Committee on Heritable Diseases in Newborns and Children - Advisory Committee on Heritable Diseases in Newborns.

PhenX-Sickle Cell Disease Project at the National Heart, Lung, and Blood Institute/NIH Ellen M. Werner, Ph.D. Program Director Blood Epidemiology and Clinical.

Building Research Capacity for Community Organizations: Strategies from the Alliance for Research in Chicagoland Communities Ben Rucker MPH, 1,2 Sherida.

2008© COPYRIGHT Thrombosis/thrombophilia patients captured at HTCs participating in ATHN Ellis J. Neufeld MD, PhD Director, Boston Hemophilia Center Director,

Collection and use of human biological specimens in research: Is there adequate ethics governance in Africa? Madison T. Little and Francis H. Barchi, PhD.

1 Matthew J. McAuliffe, Ph.D., Chief, Biomedical Imaging Research Services Section (BIRSS) CIT Ramona Hicks, Ph.D., Program Director, Repair and Plasticity.

Newborn Screening Translational Research Network Coordinating Center Duane Alexander, M.D. Director, Eunice Kennedy Shriver National Institute of Child.

Future Use of Stored Samples & Data and the NIH Policy on GWAS and dbGaP NIAID/DAIDS Dione Washington, M.S. -- ProPEP Sudha Srinivasan, Ph.D.-- TRP Tanisha.

Jamelle E. Banks, MPH Sarah Glavin, PhD Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIH.

Ohio Digital Government Summit Disease Surveillance (Homeland Security session) October 5, 2004 Rana Sen Deloitte Consulting LLP.

Michael F. Huerta, Ph.D. Associate Director for Program Development National Library of Medicine, NIH BD2K CDE Webinar – September 8, 2015 Common Data.

Anticipated FY2016 Appropriations Agency$ Million NIH200 Cancer70 Cohort130 FDA10 Office of the Natl Coord. for Health IT (ONC) 5 TOTAL215 Mission: To.

NBSTRN Update Amy Hoffman, MPH December 1, NBSTRN Structure Newborn Screening Translational Research Network2 NBSTRN CC Michael Watson, PI Barry.

Newborn Screening Translational Research Network Virtual Repository of Dried Blood Spots Investigator Demonstration February 16, 2012 Call in Number: (470)

Department of Health and Human Services National Institutes of Health National Center for Research Resources Division of Research Infrastructure Extending.

MCHB Activities to Integrate Newborn Screening & Other Child Health Information Systems Deborah Linzer Senior Public Health Analyst U.S. Department of.

Ethical and Regulatory Considerations in Research using Residual Specimens Jeffrey R. Botkin, M.D., M.P.H. Professor of Pediatrics and Medical Ethics Associate.

Belinda Seto, Ph.D. Acting Deputy Director for Extramural Research National Institutes of Health Human Subjects Research Enhancements Awards Renaissance.

ACHIEVING A LEARNING HEALTH SYSTEM THROUGH COLLABORATIVE ENGAGEMENT AND THE CREATION OF A STATEWIDE RESEARCH INFRASTRUCTURE AND CLINICAL DATA RESOURCES.

FAO, Library and Documentation Systems Division – Dr. Johannes Keizer | May 2006 AGRIS – A new Vision and Strategy GAAS, Guangzhou May 2006 A new vision.

GBIF Mid Term Meetings 2011 Biodiversity Data Portals for GBIF Participants: The NPT Global Biodiversity Information Facility (GBIF) 3 rd May 2011.

Clinical Research Informatics at the University of Michigan Daniel Clauw M.D. Professor of Medicine, Division of Rheumatology Assistant Dean for Clinical.

Newborn Screening Translational Research Network Virtual Repository of Dried Blood Spots Supplemental Slides February 16, 2012 Call in Number: (470)

The Importance of a Strategic Plan to Eliminate Health Disparities 2008 eHealth Conference June 9, 2008 Yvonne T. Maddox, PhD Deputy Director Eunice Kennedy.

Newborn Screening Translational Research Network Virtual Repository of Dried Blood Spots Investigator Demonstration March 15, 2012 Call in Number: (415)

I have no relevant financial relationships with the manufacturers of any commercial products and/or provider of commercial services discussed in this CME.

Recommendation Methods Advisory Committee on Heritable Disorders and Genetic Diseases of Newborns and Children Ned Calonge, M.D., M.P.H.

Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment May 13, 2010 Advisory Committee on Heritable Disorders in.

Call in number: Conference code: NBSTRN SCID National Call November 18, 2011.

The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.

NCI/NAPBC Model Informed Consent for Future Research Use of Tissue Marianna Bledsoe Resources Development Branch, Cancer Diagnosis Program, National Cancer.

GENOMICS TO COMBAT RESISTANCE AGAINST ANTIBIOTICS IN COMMUNITY-ACQUIRED LRTI IN EUROPE (GRACE) H. Goossens (Coordinator), K. Loens (Manager), M. Ieven.

Rare Diseases Clinical Research Network Data Management and Coordinating Center (RDCRN DMCC) Jeffrey Krischer, PhD LDN Investigator Meeting at WORLDSymposium.

National Biological Information Infrastructure Tom Lahr USGS Biological Resources Division, Office of Biological Informatics and Outreach Information Technology.

Data Coordinating Center University of Washington Department of Biostatistics Elizabeth Brown, ScD Siiri Bennett, MD.

Making Clinical Trials More Efficient Site Management Organization (SMO)

Overall support for the International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) Network was provided by the National Institute of.

Retention period(s) of samples/data Many jurisdictions, as well as hospitals and institutions, mandate retention periods for medical or research-related.

Trial Funding and Engagement: The NIH Sponsored CTSA Program

Center for Clinical and Translational Science

Presentation transcript:

Newborn Screening Translational Research Network Goals of the Hunter Kelly Newborn Screening Program Identify, develop and test the most promising technologies Increase the specificity of newborn screening and expand the number of conditions for which screening tests are available Develop experimental treatments and disease management strategies for additional newborn screening conditions, and other genetic, metabolic, hormonal and or functional conditions that can be detected through newborn screening for which treatment is not yet available

Newborn Screening Translational Research Network The NBSTRN is an NICHD funded contract awarded to ACMG (September September 2018) Mike Watson, PhD, MS – Principle Investigator The NBSTRN will develop, maintain, administer and enhance resources to support investigators with projects related to newborn screening for: –New technologies –New Conditions –New treatments and management approaches NBSTRN

Newborn Screening Translational Research Network Key Areas of Focus AreaDeliverable VRDBS Maintain, administer and enhance reliable virtual repository of dried bloodspots R4S Maintain, administer and enhance a laboratory performance database LPDR Maintain and enhance a network of centralized and institutionally-enabled infrastructure to support the capture and managed storage of longitudinal clinical data from individuals following newborn screening LPDR-DW Maintain a data repository that securely houses long-term follow-up genomic data, materials metadata and key phenotypic data for subjects followed within the long-term follow-up dataset Bioethics Establish, maintain and administer a web based interactive resource related to the ethical, legal and social issues relevant to newborn screening investigators CDEs Facilitate…the development and use of common data elements and standardized language for newborn screening disorders and disorders that may benefit in the future from newborn screening Disseminate Facilitate the timely dissemination of research findings to: relevant research communities, relevant clinical communities, state newborn screening programs Steering Establish twelve member Steering Committee that will serve in an advisory capacity

Newborn Screening Translational Research Network The ELSI Advantage is an ethical, legal and social issues resource for NBS researchers. Information on IRB's, NBS related FAQ's, and templates to customize your own Consent Forms are available in this resource. If additional ELSI related questions arise, just ask ELSA, the NBSTRN’s very own interactive avatar! NBSTRN Tools The Virtual Repository of Dried Blood Spots (VRDBS) is an open-source, web-based tool that enables NBS researchers to search over 2.9 million DBS from participating states. VRDBS The Region 4 Stork tool is a web-based application for the collection and reporting of analytical results. It has been widely adopted into the routine practice of newborn screening laboratories worldwide. LPDR The Longitudinal Pediatric Data Resource (LPDR) is a secure informatics system designed to enable enhanced data collection, sharing, management and analysis for conditions identified as part of newborn screening or for conditions that may benefit from newborn screening. R4S ELSI Advantage

Newborn Screening Translational Research Network Acknowledgements 5 Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health NBSTRN -HHSN C