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
2025
Association for European Pediatric and Congenital Cardiology (AEPC) May 28-31, 2025, Hamburg, Germany
-
Brian McCrindle (Canada) - Long-term outcomes and associated factors for patients with coronary artery aneurysms after Kawasaki disease. (Abstract Session – Oral Presentation).
-
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
-
Ashraf S. Harahsheh (United States) - Thrombocytosis is Prevalent and Associated with Greater Inflammation and Coronary Artery Involvement in Both Kawasaki Disease and Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Poster).
-
William Orr (United States) - Systemic arterial aneurysms in Kawasaki disease: An important evidence gap. (Poster).
International Kawasaki Disease Symposium (IKDS) August 26-29, 2024, Montreal, Canada
-
Nagib Dahdah (Canada) & Pei-Ni Jone (United States) - The Association of Ethnicity with Clinical Features and Cardiac Outcomes for Kawasaki Disease versus Multisystem Inflammatory Syndrome in Children Associated with Covid-19: A Study of The International Kawasaki Disease Registry. (Poster).
-
Ashraf S. Harahsheh (United States) - Incomplete Kawasaki Disease versus Non-Severe Multisystem Inflammatory Syndrome in Children: Distinguishing Features from Contemporaneous Patients. (Oral Presentation)
-
Cedric Manlhiot (Canada) - Development and Deployment of MISKD: A clinical decision support system for the diagnosis and management of patients along the KD to MISC clinical spectrum using AI-powered predictive algorithms. (Oral Presentation).
-
Brian W. McCrindle (Canada) - Predicting Shock And Left Ventricular Dysfunction In Patients Admitted With Kawasaki Disease And Misc Using Transfer Machine Learning. (Moderated Poster).
-
Michael A. Portman (United States) - Post-Admission Antibiotics Use and Risk of IVIG Resistance In Patients With KD And MIS-C. (Poster).
-
Deepika Thacker (United States) - Factors Associated with Important Coronary Artery Aneurysms For Kawasaki Disease versus Multisystem Inflammatory Syndrome in Children Associated with Covid-19: A Study Of The International Kawasaki Disease Registry (Poster).
2023
American Heart Association (AHA), Nov 11-13, 2023, Philadelphia, USA
-
Supriya S. Jain (United States) - Factors Associated With Shock At Presentation For Patients With Kawasaki Disease Versus Multisystem Inflammatory Syndrome In Children Associated With Covid-19. (Poster).
-
Michael Khoury (Canada). How Reassuring Is An Initial Echocardiogram With Normal Coronary Arteries For Patients Presenting With Acute Kawasaki Disease? (Poster).
-
Michael A. Portman (United States). Pattern Of Use Of Anakinra For Patients With Kawasaki Disease Versus Multisystem Inflammatory Syndrome In Children Associated With Covid-19. (Poster).
1st Joint Meeting of the International Kawasaki Disease Registry and EUROKiDs, November 2-4, 2023, Bologna, Italy
-
Todd T. Nowlen (United States) – Seasons of Kawasaki Disease During the COVID-19 Pandemic (Oral Presentation).
-
Luis Martin Garrido-Garcia (Mexico) – Risk of Coronary Artery Involvement for Patients with Kawasaki Disease or Multisystem Inflammatory Syndrome in Children Who Do Not Meet Criteria (Oral Presentation).
8th World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS), August 27-September 1, 2023, Washington, USA
-
Ashraf S. Harahsheh (United States) - Comparison of Contemporaneous Patients with Kawasaki Disease Versus Multi-system Inflammatory Syndrome in Children Associated with COVID-19: The International Kawasaki Disease Registry. (Poster).
Association for European Paediatric and Congenital Cardiology (AEPC) April 26-29, 2023, Dublin, Ireland
-
Marianna Fabi (Italy) – Association of Gastrointestinal Symptoms and Presentation and Outcomes for Kawasaki Disease Versus Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Poster)
-
Luis Martin Garrido-Garcia (Mexico) – Cardiac Involvement Across the Spectrum from Kawasaki Disease to Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Poster)
-
Nagib Dahdah (Canada) – Association of Sex and Age on Presentation and Outcomes of Kawasaki Disease Versus Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Moderated Poster)
2022
American Heart Association (AHA) Nov 5-7, 2022, Chicago, USA
-
Michael Khoury (Canada) – Association of Obesity in with Presentation and Outcomes for Kawasaki Disease and Disease and Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Poster).
-
Simon Lee (United States) – Spectrum and Associated Factors for Coronary Artery Involvement in Kawasaki Disease Versus Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Oral Presentation).
* Winner Outstanding Research Award in Pediatric Cardiology
-
Mollie Walton (United States) - Cardiac Biomarkers Aid in Differentiation of Kawasaki Disease from Multisystem Inflammatory Syndrome in Children Associated with COVID-19. (Poster).
Association for European Paediatric and Congenital Cardiology (AEPC) May 25-28, 2022, Geneva, Switzerland
-
Ashraf S. Harahsheh (United States) – Kawasaki disease in the time of COVID-19 – The International Kawasaki Disease Registry (Poster).
2021
International Kawasaki Disease Symposium (IKDS) Oct 29-31, 2021, Tokyo, Japan (Virtual)
-
Audrey Dionne (United States) – Factors associated with early progression of non-giant coronary artery aneurysm in Kawasaki disease. (Poster).
-
Katherine Hansen (United States) – Physicians’ self-reported exercise testing and physical activity recommendations in Kawasaki patients. (Oral Presentation).
-
Jerin Jose (United States) – COVID-19 Positive versus Negative Complete Kawasaki Disease. (Oral Presentation).
-
Cedric Manlhiot (Canada) – Phenotypic topology and classification of pediatric patients investigated for Kawasaki disease and SARS-CoV-2 related illnesses during the COVID-19 pandemic. (Oral Presentation).
-
Brian McCrindle (Canada) – Kawasaki disease in the time of COVID-19 – The evolution of the International Kawasaki Disease Registry. (Oral Presentation).
2018
International Kawasaki Disease Symposium (IKDS) June 12-15, 2018, Yokohama, Japan
-
Kevin Friedman (United States) – Comparative Effectiveness Study: Acute Treatment of Kawasaki Disease Patients with Coronary Artery Aneurysms. (Poster).
-
Cedric Manlhiot (Canada) – Low molecular weight heparin vs. warfarin for thromboprophylaxis in children with coronary artery aneurysms after Kawasaki disease. (Poster).
-
Mathew Mathew (Canada) – Structural features of coronary artery aneurysms associated with normalization of luminal diameter after Kawasaki disease. (Poster).
-
Brian McCrindle (Canada) – Medium-term complications associated with coronary artery aneurysms after KD: A study from the North American KD Registry. (Poster).
-
Brian McCrindle (Canada) – Potential utility and safety of empiric statin therapy for long-term management of patients with coronary artery involvement. (Poster).
-
Jonathan Osborne (Canada) – Agreement between current and recommended long-term medical management of coronary artery aneurysms after Kawasaki disease. (Poster).
-
Seda Tierney (United States) – Variations in Pharmacological Management of Children with Coronary Artery Aneurysms after Kawasaki Disease: A Study from the North American Registry. (Poster).
2015
International Kawasaki Disease Symposium (IKDS) February 3-6, 2015, Hawaii, USA
-
Michael Khoury (Canada) - Use of Statins in Patients with Coronary Artery Aneurysms: A Pilot Study from the North American Kawasaki Disease Registry. (Poster).
-
Cedric Manlhiot (Canada) - Thrombosis and thromboprophylaxis for patients with giant coronary artery aneurysms after Kawasaki disease: A study from the North American Kawasaki Disease Registry. (Oral Presentation).
-
Brian McCrindle (Canda) - North American Kawasaki Disease Registry: Advancing Clinical Research Through Collaboration. (Oral and Poster Presentation).
-
Brian McCrindle (Canada) Medium-term outcomes of coronary artery aneurysms after Kawasaki disease: A study from the North American Kawasaki Disease Registry. (Oral Presentation).
-
Seda Tierney (United States) - Variations in Pharmacological Management of Children with Coronary Artery Aneurysms after Kawasaki disease: A Study from the North American Kawasaki Disease Registry. (Poster).
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):
-
Jean A Ballweg (De Vos Children's Hospital, Grand Rapids, USA)
-
Nadine Choueiter (Mount Sinai, New York, USA)
-
Nagib Dahdah (CHU Sainte- Justine, Montreal, Canada)
-
Marianna Fabi (Policlinico Sant'Orsola Malpighi, Bologna, Italia)
-
Luis Martin Garrido (Hospital Angeles Lomas, Hacienda de las Palmas, Mexico)
-
Vitor Guerra (The Hospital for Sick Children, Toronto, Canada)
-
Supriya Jain (Maria Fareri Children’s, NY Medical College, Valhalla, NY, USA)
-
Brian McCrindle* (The Hospital for Sick Children, Toronto, Canada)
-
*Lead Investigator Clinical & Scientific 2013-2024
-
-
Nilanjana Misra (Northwell Health, New York, USA)
-
Todd Nowlen (Phoenix Children's Hospital, Phoenix, USA)
-
Geetha Raghuveer (Children’s Mercy Hospital, Kansas City, USA)
-
Seda Tierney (Packard Children’s Hospital, Stanford, USA)
Junior investigator(s):
-
Audrey Dionne (Boston Children’s Hospital, Boston, USA)
-
Matthew Elias (Education Co-Lead 2024-Present) (Children’s Hospital of Philadelphia, Philadelphia, USA)
-
Michael Khoury (Stollery Children’s Hospital, Edmonton, Canada)
-
Simon Lee (Education Co-Lead 2024-Present) (Lurie Children’s Hospital, Northwestern, USA)
Coordinator representative(s):
-
Rocio Gissel Gutierrez Rojas (CHU Sainte- Justine, Montreal, Canada)
Data Coordinating Centre (DCC) and Data Analytics Center (DAC) representative(s):
-
Sunita O’Shea (The Hospital for Sick Children, Toronto, Canada)
-
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.
-
Sunita O’Shea (IKDR Manager)
-
Nina Butris (IKDR Coordinator)
-
Tanveer Collins (Database Administrator)
-
Mohammad Peikari (Senior Biostatistician)
-
Meng-Fen Tsai (Senior Data Analyst)
-
Pedrom Farid (Student)
-
Dominic Gangemi (Student)
-
Prasun Kar (Student)
-
Hilary Yeung (Student)