Pediatric Brugada Syndrome Registry
|
|
|
|
|
Dear PACES Members, please see below:
|
The Pediatric Brugada Syndrome Registry aims to comprehensively understand the clinical presentation, risk stratification, and long-term outcomes of pediatric patients diagnosed with Brugada Syndrome and children coming from families with a diagnosis of Brugada syndrome.
|
Despite being primarily recognized in adults, Brugada Syndrome presents unique challenges in the pediatric population, including varying symptomatology and uncertain risk factors for sudden cardiac death. Research on the disease has so far been focus in adults, leaving a knowledge gap regarding how to better diagnose, manage and protect children affected by this condition.
|
This registry, a collaborative effort between PACES and international partners, will collect detailed clinical, genetic, and electrophysiological data from children worldwide. By pooling this data, we strive to identify key indicators of disease progression, effective management strategies, and potential genetic markers that could influence patient care. Through this concerted effort, we hope to enhance early diagnosis, personalize treatment plans, and ultimately improve the prognosis for children affected by this rare but serious cardiac condition. The registry offers the option of self-enrolment for patients and families who are interested to participate. Please use this link to find more information on the PACES website.
|
Interested investigators or individuals please contact:
|
|
|
|
|
|
|
|
|
|
|
|
|
