We are thrilled to announce the Barth Syndrome Arrhythmia Project. Funded by BSF and Barth France through the Strategic Initiatives Program (SIP), the Arrhythmia Project is one of 20+ active research projects that BSF is supporting to advance global scientific discoveries and seek treatments and interventions for Barth syndrome. Serious arrhythmias are a major cause of death in Barth syndrome, but little is known about what causes them and how common they are.
Recognizing how vitally important it is to understand and prevent loss of life from arrhythmias, BSF is investing $350,000 in this initial phase of the effort. Leveraging a robust cardiac-focused patient registry and observational study to collect historical and ongoing clinical data, the Arrhythmia Project aims to better characterize the progression of heart muscle weakness and rhythm disturbances in Barth syndrome, with the goal of saving lives. Stay tuned in the coming months about how you can participate as the project progresses.
Learn more and meet the working group here.