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The CHI-RON Study: Using PCORnet: ®: and Patient Engagement Strategies to Improve Diversity Among Research Participants in the Congenital Heart Initiative

delete2026-01-08
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OA
AI
A
Anitha S. John *
S
Scott Leezer
L
Lindsey Rudov
J
Jamie L. Jackson
M
Mindi Messmer *
S
Sneha Saraf *
R
Rittal Mehta *
S
Shreya Papneja *
A
Arwa S. Saidi
A
Aliza Marlin
D
Danielle Hile
A
Anushree Agarwal
M
Matthew Lewis *
K
Kanter, Ronald J. MD††
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Satinder Sandhu
T
Thomas Young
R
Roni Jacobsen
E
Emily Ruckdeschel
A
Adam M. Lubert
A
Ali N. Zaidi
D
Dan G. Halpern
R
Richard A. Krasuski
K
Kirubel Asfaw
K
Keith Marsolo
R
Ruth Phillippi *
A
Adebola Owolabi *
T
Thomas W. Carton
DOI：10.1097/MLR.0000000000002222delete
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Abstract

Abstract

En 中文
The Congenital Heart Initiative-Redefining Outcomes and Navigation to Adult-Centered Care (CHI-RON) study is a unique collaboration between the PCORnet and Congenital Heart Initiative (CHI), the first patient powered registry for adult congenital heart disease (ACHD) patients. The CHI-RON study examines the effects of gaps in recommended care in ACHD.
Keywords:
engagement
recruitment
congenital heart disease
rare disease
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