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What is Early Check?
§ An Innovation Award from the National Center for Advancing Translational
Sciences, with additional support from NICHD, The John Merck Fund,
Asuragen, Cure SMA
§ A research study designed to
– Develop and evaluate methods to offer free, voluntary screening to 120,000
parents/year for conditions not currently part of newborn screening (NBS)
– Acquire data to inform policy (which conditions should be included in NBS)
§ gauge parents’ interests in screening for new conditions
§ develop and test feasibility of the full complement of systems needed to implement screening
§ understand early natural history of “screen positive” infants
§ identify infants who could participate in pre-symptomatic treatment trials
§ The foundation for
– A long-term research resource to which new conditions can be added when ready
– An envisioned future in which states offer a voluntary panel of “non-RUSP” conditions
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Unique features of Early Check
§ Collaboration among multiple research partners
§ Consortium of funders
§ Statewide recruitment
§ Systematic evaluation of recruitment methods
§ E-consent
§ Highly secure information management system
§ Short and long-term follow-up, individually tailored to
each disorder
§ Telegenetic counseling
§ Studying or supporting evidence of benefits and harms
Early Check partners
Megan
Lewis
RTI Center for
Communication
Science
Cynthia Michael
Powell Cotten
UNC Duke
Chapel Hill RTI Center for
University
Newborn
Screening, Ethics,
and Disability
Studies
Nancy Scott
King Zimmerman
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Phase III: Hospital partnerships
§ Immediate goal is to ramp up awareness and explore ways that pregnant and
new mothers affiliated with a hospital could learn more about Early Check
§ We will start with our CTSA partner hospitals and 2-3 other sites who are
interested in a collaboration
§ We will use hospital level data to target high birthrate and/or low consent
sites
§ We plan a systematic evaluation of the effectiveness of recruiting through
patient portals
We are tracking hospital-level data and will use this to target
selected hospitals and evaluate hospital-level approaches
ANNUAL BIRTHS EARLY CHECK ENROLLMENT (2/12/19)
HOSPITAL # % of State # % of Early Check
A 3732 3.1 79 4.8
B 5742 4.8 134 8.2
C 2256 1.9 65 4.0
D 3564 3.0 75 4.6
E 6456 5.2 104 6.4
F 7800 6.6 68 4.2
G 4848 4.4 94 5.8
H 4308 3.6 46 2.8
I 1044 .9 38 2.3
J 696 .6 10 .6
Our ask of you
Don Bailey
dbailey@rti.org
1-919-541-6488
www.earlycheck.org
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