Participating in Research

The Research Workgroup is responsible for monitoring research projects that utilize SV-ONE registry data. The workgroup is responsible for reviewing research proposals submitted by members of the network, providing design and analyses feedback, and making recommendations regarding acceptance of research proposals. Research opportunities will be shared with SV-ONE members as they are available.

The most recent open call for research proposal submissions has closed. Our Research Workgroup is currently updating the research proposal process and plans to share updated information soon. If you have any questions about SV-ONE research proposals in the meantime, please contact info@svone.org.

You may also review the resources below for guidance on previous research proposal requirements:

FON Legacy Data Collection Forms

FON Legacy Data Definitions Manual

Research Publications

View Research Publications Library

Research Explained

Since October 2013, parents on the Research Workgroup have helped select research studies that are important and relevant to families. For each selected study, they create a "Research Explained" summary—an easy-to-understand version that explains the medical research in simple, clear language.

These summaries highlight what the research found and why it matters. For example, a February 2015 summary explained a study showing that children with HLHS may have developmental delays by age 3 compared to other children.

"Research Explained" is a great example of how families and the cardiology community work together to make medical information more accessible and meaningful.

View Research Explained Library