FREQUENTLY ASKED QUESTIONS

If you or your loved one’s care center is not yet a member of FON, we hope they will join us! FON accepted new care center applications from April of 2023 through July of 2023. FON will be open to new applications again in April of 2024. You can encourage your care center to learn more about FON by carefully reading through our Application Informational Packet which lists the benefits and expectations of FON care centers, as well as the participant fee.

New care centers can begin the FON IRB/DUA process as soon as they are accepted to the network. Our most recent group of new centers began full onboarding in July of 2023.

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FON is currently in the process of transitioning to a new lifespan learning network called the Single Ventricle Outcomes NEtwork (SV-ONE) in July 2025. Please contact info@fontanoutcomesnetwork.org for additional information about joining the network.

Care Centers should establish a multidisciplinary team with expertise in the areas of focus for FON and sufficient authority to effect change in these areas. A team may optimally include, but is not limited to, the following:

• Pediatric and/or adult cardiologist (required)

• Individual with SVCHD and/or a parent of a child with SVCHD (required).

We recognize that not all centers have experience with having a patient or parent integrated into their team. Our FON project team can help you with how to move forward on this.

• NP/RN/PA

• Psychologist

• Social Worker

• Research Coordinator

• Collaboration with key specialties, such as hepatology, neurodevelopment, nephrology, exercise physiology and cardiac rehab, information services, and radiology

Some questions to consider when forming your team include:

• Do you have a data or research coordinator who is ready to engage?

• Have you identified a parent or patient champion?

• Who at your center is passionate about FON research or quality improvement?

The fee to participate in FON is $15,000 per academic calendar year (July-June) per care center. This fee is subject to change.

The annual fee of $15,000 enables the network to sustain current operations and support critical quality improvement and data collection activities. The fee provides partial support for the Network so that care center teams can:

• Learn from colleagues about best practices, effective tools, and strategies

• Improve care and outcomes for individuals with SVCHD

• Learn and apply formal Quality Improvement methods

• Utilize the Network to address patient safety and quality improvement metrics

• Use registry data for research

FON will require centers to start collecting encounter data for each participant at least annually.

The ultimate goal of FON is to collect comprehensive longitudinal visit based data, when feasible. We are planning for EHR integration, but expect this process to take several years to implement. Until then, data collection at most centers will depend heavily on manual entry. We are deeply committed to working with centers to streamline data collection, so please reach out if you have ideas or questions.

When the registry is launched in summer 2022, centers will collect longitudinal data for each participant at least annually. In addition, centers will collect monthly data on a subset of encounters to inform QI and plan for future integration of longitudinal encounter-based data collection. The initial focus will be on enrollment, and we are targeting January 2023 to start collecting this sample of visit-based data.

FON is finalizing the data collection forms now and preparing them for the registry vendor. You can access a draft version of the forms here. Please be aware that these forms are subject to minor changes, and updates will be posted. As a reminder, care centers can only start collecting patient data after they have received IRB approval.

The FON registry has launched. Participating Care Centers can start enrolling patients once the required regulatory steps have been completed.

The Regulatory & Legal Agreement Packet for FON was sent to current FON care centers in July of 2023. Our next onboarding class with be in July of 2024.

If you have any questions regarding the IRB/DUA process, need to request that these documents be re-sent, or would like to view a recording of the regulatory webinar, please email ereg-FON@cchmc.org.

FON is using a single IRB as is frequently being done for efficiency. All centers will need to rely on the CCHMC IRB. Care Centers will review the initial IRB and then use the CCHMC IRB for review. If your site has questions or concerns with this process, please reach out to the CCHMC regulatory coordinator who will work with you and your site’s specific requirements.

In July 2025, FON and NPC-QIC will merge and transition to become the Single Ventricle Outcomes NEtwork (SV-ONE). Given the overlapping missions and close partnership of these two networks, the leadership teams of both FON and NPC-QIC have decided that the networks will enhance collaboration​ and work towards becoming one organization ​to create a lifespan registry for single ventricle patients.

FON's initial focus is to launch the registry to enable enrollment and data collection as soon as possible. The current scope of work with our registry development partner includes developing a plan to link FON with other registries. FON's IRB protocol, informed consent, and data use agreement all support linking data with other registries to enhance the value of the information collected. There will be many details to address with each participating center and the other datasets, however, and we expect this process to take several years to implement.