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 requires investigators to submit a Letter of Intent (LOI) prior to submitting a FON Legacy Data Research Proposal to gauge the project's feasibility and alignment. LOIs are accepted two times per calendar year based on the following deadlines:
April 15
October 15
The LOI Template and submission form, as well as other FON Legacy Research Proposal Process documents are available below:
FON Legacy Data Collection Forms (list what data are being collected in the FON Legacy Registry)
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:
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.