The International Kawasaki Disease Registry (IKDR)
The IKDR began in 2013 as a two-center collaboration that quickly grew by word of mouth and then by invitation.
The IKDR initially focused on tracking cardiac outcomes and associated factors for Kawasaki disease patients with aneurysms. The IKDR now includes 50+ sites and is growing. We have enrolled nearly 2000 aneurysm patients between 1999 and 2017 and since January 1, 2020, enrolled more than 4000 Kawasaki Disease (KD), Multisystem Inflammatory Syndrome in Children (MIS-C), and COVID positive patients.
Our productivity and impact have been accelerating. At the International KD Symposium (IKDS) held every 3 years, we presented 5 abstracts in 2015, 7 abstracts in 2018, 5 abstracts in 2021, and 6 in 2024. Since 2020, we have published 18 manuscripts (including one with NEJM), 2 invited reviews, and currently have 2 manuscripts under review. We presented one abstract at the 8th World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) 2023, 2 abstracts to the American Heart Association (AHA) 2024, and have 2 abstracts submitted to the upcoming Association for European Pediatric and Congenital Cardiology (AEPC). In November 2023, we successfully hosted our first joint in-person meeting with the pediatric rheumatology group EURO-KiDs in Bologna, Italy and presented 3 abstracts.
Of note, we have secured National Institutes of Health (NIH) funding through the PreVAIL kIds grant aimed at AI/machine learning initiatives with our population with one manuscript accepted by JACC Advance. We are currently working on 3 additional grants submissions including one to support recruitment in low-and-middle income countries.
The IKDR adheres to a number of general principles.
Fairness – Everyone has an equal vote (by site), everyone’s participation is valued and recognized, and everyone has an opportunity to contribute. While there are big centers and small centers, the aim is that all are equal.
Recognition – Everyone gets credit, which is calibrated to participation, commitment and contribution.
Coordination – Data and analyses are maintained centrally, although there are mechanisms for sites to form small group collaborations.
Leadership – All input is welcome at all times.
Autonomy – Sites own their data, and participation is voluntary. Any site can choose to exclude their patients from certain analyses, stop contributing new patients, or to withdraw their patients altogether at any time.
Obligation – Expectations are the same for all sites.
We strive to be more than just a database. Members from the group are tracking and sharing the literature. We have a forum for clinical conundrum and case discussion. We have organized 21 open educational webinars since 2020. We strive to host meetings in association with major conferences, such as the IKDS and the AHA Scientific Sessions. We held our first in‐person Annual meeting in June 2022 in Montreal, Canada, in 2023 our annual meeting was hosted in Bologna, Italy in collaboration with EURO-KiDs, and in 2024 we held a reception for all IKDR members to connect at the IKDS in Montreal.
We can invite you or your representative to attend one of our regular virtual meetings to see what we are up to and our progress. We can also send you our protocol. We would be happy to answer any questions at your convenience.
Please contact IKDR Manager Ms. Sunita O’Shea at sunita.oshea@sickkids.ca
The IKDR strives to publish our manuscripts in open journals to allow immediate access to our publications. Full list in chronological order below. If you cannot access a manuscript, please contact sunita.oshea@sickkids.ca.
PUBLICATIONS
ICU Admission Prediction for Patients With Kawasaki Disease or MIS-C Using Machine Learning.
JACC Adv. 2025 Feb. doi: 10.1016/j.jacadv.2025.101621. Online ahead of print.
Emerging Insights Into the Pathophysiology of Multisystem Inflammatory Syndrome Associated With COVID-19 in Children.
Can J Cardiol. 2023 Jun. doi: 10.1016/j.cjca.2023.01.002.
PMID: 36626979
Management of Multisystem Inflammatory Syndrome in Children: Decision-Making Regarding a New Condition in the Absence of Clinical Trial Data.
Can J Cardiol. 2023 Jun. doi: 10.1016/j.cjca.2022.11.011.
PMID: 36455760
SARS-CoV-2 Variants and Multisystem Inflammatory Syndrome in Children.
N Engl J Med. 2023 Apr. doi: 10.1056/NEJMc2215074.
PMID: 36947454
The IKDR has been successful in every Abstract submission to several scientific meetings. In the year 2024 alone, we had 7 abstracts presented at the American Heart Association annual scientific meeting and at the 14 th International Kawasaki Disease Symposium (IKDS). Here is the list of conferences where our Abstracts were submitted since 2015
2025
Association for European Pediatric and Congenital Cardiology (AEPC) May 28-31, 2025, Hamburg, Germany
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Brian McCrindle (Canada) - Long-term outcomes and associated factors for patients with coronary artery aneurysms after Kawasaki disease. (Abstract Session – Oral Presentation).
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Geetha Raghuveer (United States) - Characteristics, management and clinical course of Kawasaki disease during versus after the COVID-19 pandemic. (Flash Talks Session 1 – Oral Presentation).
2024
American Heart Association (AHA) November 7-10, 2024, Chicago, USA
International Kawasaki Disease Symposium (IKDS) August 26-29, 2024, Montreal, Canada
2023
American Heart Association (AHA), Nov 11-13, 2023, Philadelphia, USA
1st Joint Meeting of the International Kawasaki Disease Registry and EUROKiDs, November 2-4, 2023, Bologna, Italy
8th World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS), August 27-September 1, 2023, Washington, USA
Association for European Paediatric and Congenital Cardiology (AEPC) April 26-29, 2023, Dublin, Ireland
2022
American Heart Association (AHA) Nov 5-7, 2022, Chicago, USA
Association for European Paediatric and Congenital Cardiology (AEPC) May 25-28, 2022, Geneva, Switzerland
2021
International Kawasaki Disease Symposium (IKDS) Oct 29-31, 2021, Tokyo, Japan (Virtual)
2018
International Kawasaki Disease Symposium (IKDS) June 12-15, 2018, Yokohama, Japan
2015
International Kawasaki Disease Symposium (IKDS) February 3-6, 2015, Hawaii, USA
Co-Lead Investigator (Clinical): Dr. Ashraf Harahsheh (Children’s National Hospital, Washington, USA)
Co-Lead Investigator (Scientific): Dr. Cedric Manlhiot (The Hospital for Sick Children, Toronto, Canada)
Senior investigator(s):
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Jean A Ballweg (De Vos Children's Hospital, Grand Rapids, USA)
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Nadine Choueiter (Mount Sinai, New York, USA)
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Nagib Dahdah (CHU Sainte- Justine, Montreal, Canada)
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Marianna Fabi (Policlinico Sant'Orsola Malpighi, Bologna, Italia)
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Luis Martin Garrido (Hospital Angeles Lomas, Hacienda de las Palmas, Mexico)
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Vitor Guerra (The Hospital for Sick Children, Toronto, Canada)
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Supriya Jain (Maria Fareri Children’s, NY Medical College, Valhalla, NY, USA)
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Brian McCrindle* (The Hospital for Sick Children, Toronto, Canada)
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*Lead Investigator Clinical & Scientific 2013-2024
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Nilanjana Misra (Northwell Health, New York, USA)
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Todd Nowlen (Phoenix Children's Hospital, Phoenix, USA)
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Michael A. Portman (Seattle Children’s Hospital, Seattle, USA)
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Geetha Raghuveer (Children’s Mercy Hospital, Kansas City, USA)
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Seda Tierney (Packard Children’s Hospital, Stanford, USA)
Junior investigator(s):
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Audrey Dionne (Boston Children’s Hospital, Boston, USA)
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Matthew Elias (Education Co-Lead 2024-Present) (Children’s Hospital of Philadelphia, Philadelphia, USA)
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Michael Khoury (Stollery Children’s Hospital, Edmonton, Canada)
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Simon Lee (Education Co-Lead 2024-Present) (Lurie Children’s Hospital, Northwestern, USA)
Coordinator representative(s):
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Rocio Gissel Gutierrez Rojas (CHU Sainte- Justine, Montreal, Canada)
Data Coordinating Centre (DCC) and Data Analytics Center (DAC) representative(s):
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Sunita O’Shea (The Hospital for Sick Children, Toronto, Canada)
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Tanveer Collins (The Hospital for Sick Children, Toronto, Canada)
Representative from any active Working Group: No active working groups at this time
Patient/parent representative(s): Not yet activated.
The IKDR Data Coordinating Centre (DCC) is located at The Hospital for Sick Children, Toronto, Canada. The IKDR DCC manages the day-to-day operations of the IKDR.
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Sunita O’Shea (IKDR Manager)
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Nina Butris (IKDR Coordinator)
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Tanveer Collins (Database Administrator)
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Mohammad Peikari (Senior Biostatistician)
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Meng-Fen Tsai (Senior Data Analyst)
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Pedrom Farid (Student)
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Dominic Gangemi (Student)
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Prasun Kar (Student)
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Hilary Yeung (Student)