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Newborn Screening Translational Research Network Virtual Repository of Dried Blood Spots Investigator Demonstration March 15, 2012 Call in Number: ( 415) 363-0075    Access Code: 444-900-562. Agenda. Presenter and Speaker Introductions

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Newborn Screening Translational Research Network Virtual Repository of Dried Blood Spots Investigator DemonstrationMarch 15, 2012Call in Number: (415) 363-0075   Access Code:444-900-562

agenda
Agenda
  • Presenter and Speaker Introductions
  • About the Newborn Screening Translational Research Network
  • Training Webinar Topics
    • About the Virtual Repository
    • Search for Dried Blood Spots
    • Request Dried Blood Spots
    • Provide Feedback on Dried Blood Spots
  • Question and Answer

Newborn Screening Translational Research Network

introductions
Introductions

Amy Hoffman, MPH

Project Manager

Newborn Screening Translational Research Network (NBSTRN)

American College of Medical Genetics (ACMG)

ahoffman@acmg.net

Erica Marrari, PMP

Project Manager

5AM Solutions, Inc.

emarrari@5amsolutions.com

Newborn Screening Translational Research Network

goals of the hunter kelly newborn screening program
Goals of the Hunter Kelly Newborn Screening Program

Newborn Screening Translational Research Network

nbstrn mission
NBSTRN Mission

The mission of the Newborn Screening Translational Research Network (NBSTRN) is to improve the health outcomes of newborns with genetic or congenital disorders by means of an infrastructure that allows investigators access to robust resources for newborn screening research.

Newborn Screening Translational Research Network

scope of work
Scope of Work
  • Network of State NBS Programs and Clinical Centers
  • National Research informatics system
  • Repository of dried blood spots (virtual)
  • IRB, consent, policy expertise and support
  • Facilitate research on new technologies
  • Facilitate research on effectiveness of treatments and long-term outcomes
  • Statistical leadership and clinical trial design expertise
  • Facilitate timely dissemination of research findings
  • Recruit steering committee to make recommendations

Newborn Screening Translational Research Network

nbstrn organization
NBSTRN Organization

Network of Experts

NICHD Staff:

Tiina Urv, Project Officer

Katharine Minker, Contract Officer

Key Partners: APHL, Genetic Alliance, Regional Collaboratives, NNSGRC, Federal Agencies (Centers for Disease Control (CDC), Health Resources and Services Administration (HRSA), National Institutes of Health (NIH))

Newborn Screening Translational Research Network

project time framework
Project Time Framework
  • Years 1-2 were mainly developmental
    • IT and informatics
    • Website and content
    • Tools and resources
    • Bioethical and legal issues
  • Years 3-5 are implementation
    • Pilots to test NBSTRN infrastructure
      • Ongoing development and refinement
    • Grantee and contractor collaborations developing

Newborn Screening Translational Research Network

vrdbs overview
VRDBS Overview
  • A Centralized, web-based inventory of available DBS specimens
    • Allow Investigators to search and request DBS specimens
    • Provide Administrators with tools to review, approve/deny, and manage requests
    • Provide State Lab Technicians with ability to track shipments
    • Provide Investigator feedback
  • Load DBS data from participating States into the central Repository

Newborn Screening Translational Research Network

value of the vrdbs
Value of the VRDBS
  • Provide simultaneous cross-state view of available DBS for participating states
  • Provide insight into the data elements a state collects (early stage investigators)
  • Provide a single-point to browse the rules and regulations of each state
  • Automate the workflow and provide a single point for request management
  • Provide a secure-web-based tool for State NBS Laboratories to share their data more easily to the research community

Newborn Screening Translational Research Network

vrdbs onboarding process
VRDBS Onboarding Process

Newborn Screening Translational Research Network

vrdbs system roles
VRDBS System Roles

Newborn Screening Translational Research Network

vrdbs workflow overview
VRDBS Workflow Overview

1

2

3

Register for an Account

Search for Dried Blood Spots (DBS)

Make a Request for DBS

NBSTRN Reviews

VRDBS shows information about stored DBS input by participating states

VRDBS automatically notifies state(s) that a request has been made

4

5

6

Receive

Notification of State Approval or Denial of Request(s)

Receive DBS

and Conduct Research

Return Remaining DBS to State(s) if Required

State Reviews and Approves or Denies DBS

State Ships Approved DBS

State Determines if DBS must be Returned

Newborn Screening Translational Research Network

virtual repository demonstration
Virtual Repository Demonstration

Newborn Screening Translational Research Network

slide15

Question

and

Answer

Please use the dialogue box on the webinar to submit questions.

Newborn Screening Translational Research Network

monthly vrdbs training dates
Monthly VRDBS Training Dates

Newborn Screening Translational Research Network

thank you
Thank You

Thank you for attending today’s Newborn Screening Translational Research Network’s Virtual Repository of Dried Blood Spots webinar

For more information, please visit nsbtrn.org oremail ahoffman@acmg.net

NBSTRN is funded by contract HHSN27520080001C from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health

Newborn Screening Translational Research Network