Patient-Centered Outcome Measures

Congenital Heart Disease

Completed & Harmonized

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ICHOM Standard Sets Congenital Heart Disease Outcomes Wheel

Set Materials

Congenital Heart Disease Reference Guide
Congenital Heart Disease Data Dictionary
Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group
Congenital Heart Disease- Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group

Team that developed this set

PROJECT TEAM
Chair | Gerard Martin | Children’s National Hospital
Research Fellow | Kevin Hummel | University of Utah
Project Manager | Sarah Whittaker | ICHOM
Project Team Member | Lisa Hom | ICHOM
Research Associate | Shannon Quinney | ICHOM
Research Associate | Nick Sillett | ICHOM

BRAZIL
Ulisses Alexandre Croti | Hospital da Criança e Maternidade

CANADA
Steven Schwartz | The Hospital for Sick Children

COLOMBIA
Tomás Chalela | Fundación Cardioinfantil

INDIA
Julie Chauhan | All India Institute of Medical Science, New Delhi

MEXICO
Luis Antonio Garcia | Kardias A.C. Foundation
Almudena March | Kardias A.C. Foundation
Juan Samaniego De La Parra*

NETHERLANDS
Ingrid van Beynum | Erasmus University MC, Sophia Children’s Hospital, Rotterdam

PAKISTAN
Farhan Ahmad | Pakistan Children’s Heart Foundation*
Babar Hasan | The Aga Khan University
Laila Ladak | The Aga Khan University

RUSSIA
Ekaterina Anikeeva | Research Institute for Complex Issues of Cardiovascular Diseases

SOUTH AFRICA
Monique Kemp | Global ARCH*

SPAIN
Joan Sanchez de Toledo | Hospital Sant Joan de Déu

SWEDEN
Malin Berghammer | University West, Queen Silvia Children’s Hospital*

SWITZERLAND
Markus Schwerzmann | Center for Congenital Heart Disease, University Hospital Inselspital, University of Bern

UGANDA
Michael Oketcho | Uganda Heart Institute

UNITED STATES
Amy Basken | Conquering CHD*
Kathy Jenkins | Boston Children’s Hospital
Richard Jonas | World Society for Pediatric and Congenital Heart Surgery
Nicolas L. Madsen | Cincinnati Children’s Hospital
Disty Pearson | Boston Children’s Hospital*
James D. St Louis | Children’s Mercy Hospital, Kansas City
Amy Verstappen | Global ARCH*
Roberta Williams | Children’s Hospital Los Angeles, University of Southern California
Bistra Zheleva | Children’s HeartLink

VIETNAM
Mai Hương Trần | National Children’s Hospital

*Patient representative

ICHOM Standard Sets Congenital Heart Disease Working Group Members

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