International Paediatric Brugada Registry
International Paediatric Brugada Registry: Survey of the Diagnostic approaches around the world
Presently, it is still debated how to correctly diagnose children with Brugada syndrome and how to assess their risk for dangerous arrhythmic events. Many different strategies exist around the world. To get an up-to-date picture of diagnostic strategies employed we sent out a survey to all participating centres of the International Paediatric Brugada Registry. The results are now available, showing, on the whole, an increasing consensus on certain diagnostic practises, such as the drug challenge testing, and a strong increase in family screening. Genetic testing is becoming increasingly important and is widely used. However, much has still to be learned, before we can interpret many of these results with certainty.
The International Paediatric Brugada Registry strives to provide data to fill this gap in knowledge. In 2024 the first big datasets will be ready for analysis.
SADS UK are pleased to have provided funding to support this vital research.
Thank you to all our contributing authors:
Mitchell Cohen MD
Co-Director of the Heart Center
Chief, Pediatric Cardiology
Inova L.J. Murphy Children’s Hospital
Fairfax, USA
Rafael Correa
Cardiologia Pediatrica
Clinica CardioVID
Medellín, Colombia
Anne Fournier, MD
Department of Cardiology, Section Électrophysiologie
CHU Sainte-Justine
Montréal, Canada
Amalia Glucksberg-Stefani, MD
Kinderkardiologie
Kantonsspital St. Gallen
St. Gallen, Switzerland
Cecilia Gonzalez Corcia, MD
Department of Paediatric Cardiology
Bristol Royal Hospital for Children
Bristol, United Kingdom
Adele Greyling, MD
Paediatric Cardiology and Electrophysiology
Mediclinic Vergelegen
Cape Town, South Africa
Robert Murray Hamilton, MD, MHSc
Professor and Senior Associate Scientist
The Labatt Family Heart Center, Department of Pediatrics and Translational Medicine
The Hospital for Sick Children and University of Toronto
Toronto, Canada
Janneke A.E. Kammeraad, MD, PhD
Department of pediatric cardiology
Erasmus MC – Sophia Children’s Hospital
Rotterdam, The Netherlands
Ulrich Krause, MD
Department of Pediatric Cardiology, Intensive Care Medicine and Neonatology
University Medical Center, Georg-August-University
Göttingen, Germany
Tomasz M Ksiazczyk, MD, PhD
Department of Pediatric Cardiology and General Pediatrics
Medical University of Warsaw
Warsaw, Poland
Sit-yee Kwok, MSc, MBChB
Cardiology Centre, Department of Paediatrics and Adolescent Medicine
Hong Kong Children's Hospital
Hong Kong SAR, China
Andrew Landstrom, MD, PhD Director, Duke Pediatric Research Scholars Program
Associate Professor
Department of Pediatrics, Division of Cardiology
Department of Cell Biology Duke University School of Medicine
Durham, USA
Karen A McLeod, MD
Royal Hospital for Children
Glasgow, UK
Elena Montanes, MD
Department of Pediatric Cardiology
Hospital 12 de Octubre
Madrid, Spain
Senem Özgür
Department of Pediatric Arrhythmia and Electrophysiology
Dr. Sami Ulus Children's Hospital
Health Sciences University
Ankara, Turkey
William Regan, MBChB
Evelina London Children’s Hospital
Department of Paediatric Cardiology
London, United Kingdom
Shubhayan Sanatani, Prof., MD, BSc
Division of Cardiology
Department of Pediatrics, Faculty of Medicine, University of British Columbia
Vancouver, Canada
Gary Tse, MD
1 Tianjin Key Laboratory of Ionic-Molecular Function of Cardiovascular Disease, Department of Cardiology, Tianjin Institute of Cardiology, Second Hospital of Tianjin Medical University Tianjin, China. 2. School of Nursing and Health Studies, Hong Kong Metropolitan University
Hong Kong, China.
Gregory Webster, MD, MPH
Assistant Professor of Pediatrics (Cardiology)
Ann & Robert H. Lurie Children’s Hospital of Chicago
Northwestern University Feinberg School of Medicine
Chicago, USA
Cordula M Wolf, MD
Assistant Professor
Department of Paediatric Cardiology
German Heart Centre Munich
Munich, Germany
Norah Yap
Department of Paediatric Cardiology
Southampton Children’s Hospital Southampton, United Kingdom
Related Items
Bleed kits
There have been horrendous stories about stabbings in London and other cities; most recently a young boy Alfie Lewis sadly died after being stabbed in Leeds.
SADS UK have Bleed Kits which are available to go into the SADS UK cabinet, together with defibrillator. The Bleed Kit is also available separately for purchase, the bleed kits are for severe bleeding, as in a stabbing or traumatic accident causing chaotic bleeding.
Abolishing VAT on defibs
During September and Shoctober, the cardiac charity SADS UK is doubling down on our plea to Government to abolish VAT on defibrillators, enabling wider access to defibrillators and consequently saving more lives. Contact SADS UK if you would be happy to speak with the media. Supporting the BHTA - SADS UK, members and supporters are writing to their MPs urging their support for defibrillators to be VAT exempt. SADS UK will provide a template letter and to help you get your story to your local MP. Email: [email protected]
Defibrillator donated in memory of Clare Yates
SADS UK are pleased to have supported Mark Yates in donating a defibrillator to Buttercup Tea Rooms, Billesdon, in loving memory of his wife Clare who passed away in November 2021. Clare worked at Buttercups Tea Room and Mark wanted to help safeguard her work colleagues and equally the significant number of visitors they have on site.
Annual Joe Spooner Darts Tournament 2022
SADS UK thanks Tracey, Stephen and everyone who supported the Annual Joe Spooner Darts Tournament. Joe tragically passed away aged 15 in 2005 and since his death Tracey and Stephen have supported SADS UK and raised awareness and funds in his memory which has enabled over 35 defibrillators to be donated to schools and communities in memory of Joe to help save lives.
FEBRUARY IS NATIONAL HEART MONTH
.jpg)
February 2022 is National Heart Month - an annual event to raise awareness and encourage people to look after their heart. SADS UK invites members to get involved in a number of different ways : raising awareness and funds to place a Community Public Access Defibrillator to help save lives, Wear it Red Day on 14th February 2022, hold a fundraising event for SADS UK on Valentines Day, share your story on social media and tag @SADSUK. ♥
SADS UK New Patron Dr Amir Khan GP
PATRON ANNOUNCEMENT -SADS UK
SADS UK are proud to have the support of our new Patron Dr. Amir Khan GP(MBCHB (Hons) MRCGP DCH DRCOG PGCE DipDiab) Dr Khan is the Resident Doctor on ITV’s Lorraine and Good Morning Britain. Dr Khan says “As a GP in my practice in Bradford I have experienced first-hand the devastating effect of SADS on individuals and families and have supported families through this difficult time. I endorse the work of SADS UK and their commitment to families who have been affected by SADS or are living with inherited cardiac conditions. SADS UK have worked for over 20 years placing defibrillators in schools, sports centres and communities to help save lives should a person suffer a cardiac arrest. I am proud to become a Patron of such an important charity.”
Defibrillator donated to The Crown, Cowley In Memory of Charlie Naughton
Charlie Naughton tragically passed away from SADS on 29th June 2021 aged just 29. He was in The Crown, Cowley, London watching the England vs Germany game when Harry Kane scored he suddenly collapsed while others around him were celebrating. The ambulance services worked tirelessly on Charlie for 3 hours, however they could not save him.
SADS UK Exhibiting at the SADS Foundation 2021 Virtual Annual Conference on 6th and 7th November 2021
SADS UK is pleased to be exhibiting via a Virtual Booth at the SADS (Sudden Arrhythmia Death Syndromes) Foundation 2021 Virtual Annual Conference, which will be held online on November 6th and 7th!
SADS UK Patron receives Rare Award
SADS UK staff and supporters congratulate Dr Andrew Grace, who has been awarded the title of Honorary Professor of Experimental Cardiology by the University of Cambridge.
SADS UK Fundraising Statement for Covid-19
SADS UK relies heavily on our fundraisers to help the charity in our aims to save lives due to sudden cardiac death. We thank you for your support creating your own event or taking part in organised events to raise funds for SADS UK.
SADS UK Heartwize Project Statement for Covid 19
The cardiac charity SADS UK is delighted that the Heartwize Project teaching Year 10 pupils CPR & defibrillation has been so well received by schools in Essex.
Resuscitation Council UK Statements on COVID-19
Resuscitation Council UK is monitoring closely COVID-19’s impact in the UK.
https://www.resus.org.uk/media/statements/resuscitation-council-uk-statements-on-covid-19-coronavirus-cpr-and-resuscitation/?fbclid=IwAR3YlJwrBedMwSg4OOxTSyaSJz_2RKChRyoKFfshrCEZL7s3XpJHuJtpMR0
Please follow us on Facebook and Twitter
Our social media channels provide important information about the charity and new medical developments.
Chief Coroner Reported to be Reinstated
SADS UK Responded to the Public Bodies Bill and the draft charter for the current coroner service.
Newsletter June 2015
SADS UK latest newsletter, updating our subscribers with the latest medical information as well as events and charity information, is out!
Sudden Death - National Guidelines
Back in 2004, SADS UK were instrumental in bringing about an extension to the Department of Health National Service Framework for coronary heart disease.
