RESEARCH OVERVIEW

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 NPC-QIC and FON Legacy Research Proposal Processes will remain in place until the SV-ONE Registry is fully established. All care center teams will be notified before any changes to the processes are set to take place. If you have any questions, please contact info@svone.org.

Resources for FON Legacy Data Researchers

The Research Workgroup is preparing to kick off its next cycle for Research Proposals for FON Legacy Data. Please see below for important information and upcoming deadlines.

Learn more about the FON Legacy Research Proposal Process in the following documents:

• FON Legacy Research Proposal Manual 2025

• Letter of Intent Submission Form

• FON Legacy Data Collection Forms (list what data are being collected in the FON Legacy Registry)

• FON Legacy Data Definitions Manual

• FON Legacy Enrollment Variable Request Table

• FON Legacy Previously Accepted Proposals

• FON Legacy Authorship Guidelines

Upcoming Deadlines for FON Legacy Data Researchers:

• October 20, 2025: Letter of Intent Submission deadline

  • The Research Workgroup requires investigators to submit a Letter of Intent (LOI) prior to submitting a proposal to gauge the project's feasibility and alignment. Additional details are available here.

Resources for NPC-QIC Legacy Researchers

The NPC-QIC Legacy Research Proposal Process operates on a quarterly cycle. Research Proposals are accepted based on the following quarterly deadlines of each calendar year:

• January 3

• April 1

• July 1

• October 1

Learn more about the NPC-QIC Legacy Research Proposal Process in the following documents:

• NPC-QIC Legacy Authorship Guidelines

• NPC-QIC Legacy Phase II Data Forms 

• NPC-QIC Legacy Quarterly Process for Research Proposal Submissions

• NPC-QIC Legacy Research Proposal Form

• NPC-QIC Legacy Report Request Form

Research Publications

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. 

Bulletin Board

Visit our Bulletin Board for details on participating in single ventricle-related projects, research, and other opportunities within our community.