Additional Ventures Foundation

Additional Ventures is building the world's largest genomics dataset of single ventricle patients and their immediate family members to fuel research to discover the causes of single ventricle heart disease as well as the genetic contributors to related CO-morbidities and complications. The deidentified data will be made available free of charge to all qualified researchers through a simple application process. At least 5,000 single ventricle patients and 5,000 of their family members will be recruited and consented to participate and contribute a dna sample (cheek swab) which will be whole genome sequenced, and patients will be asked to share cardiac medical records. A website platform enables virtual recruitment with dna kits mailed to participants' homes, complemented by in-clinic recruitment at a small number of sites to increase enrollment. In 2024, Additional Ventures partnered with iqvia to build and manage the study site platform, and with gencove and gene by gene to conduct sequencing and data processing. A pilot study was launched in august, followed by the full study launch in december 2024.