Research Collaboration

Collaborate With FON

The Fontan Outcomes Network (FON) has a strong interest in facilitating and empowering work that advances knowledge about single ventricle heart disease and the Fontan circulation.

While FON itself will include many different projects, including quality improvement (QI) and research, there will be aligned work that may not originate or be coordinated or fully managed by FON. FON hopes to use its network to enhance the impact of rigorous Fontan-related projects throughout our community. 

This webpage outlines a framework for FON to consider communication, support, and collaboration with other initiatives related to single ventricle/Fontan circulation and patients, such as ad hoc research projects and larger, programmatic initiatives. Because of the diversity of potential projects, there will be nuances and considerations specific to each project; it is anticipated this guideline will evolve over time, and FON will remain flexible when considering new proposals. 

FON encourages communication and collaboration among QI, research or educational initiatives that target a similar population.

Such initiatives that do not originate from FON, may apply to FON for consideration of information sharing, cross-promotion, or direct collaboration.

FON wishes to be a community resource for dissemination and posting of important Fontan related initiatives.

For the purpose of framing requests, these are the two levels of collaboration with FON:

    • Multiple research studies or QI projects often approach the same patient or family at the same time for enrollment. Outside of FON investigators and FON may choose to coordinate to improve efficiency and minimize confusion.

    • Each center should consider how best to align enrollment between research studies. We anticipate no universal FON approach, since the best approach will be highly dependent on local workflow, staffing, and specific study protocols.

    • Through posting of initiatives such as research studies, FON makes no commitment to facilitate coordination of enrollment between studies. However, to the extent feasible at each site, FON will encourage such coordination to improve participant experience and advance Fontan research.

    • FON’s network infrastructure provides for a strong framework for multicenter investigation. Interest in utilizing FON for such purposes should engender application and pursuit through the appropriate FON workgroup channels (e.g., Research, QI workgroups), as outlined below.

    • FON network infrastructure will provide a strong framework for future multicenter collaborative investigation.

    • Projects and studies may be designed that allow for systematic co-enrollment of participants into FON (or engagement with FON participants who may be eligible for enrollment) as well as enrollment into other projects (e.g., educational endeavors, genetics or other biobanking research, population-based studies).

    • Projects that seek such co-enrollment or other systematic alignment will be referred to the FON Executive Leadership Team for consideration and decision.

    • Co-enrollment may reflect a joint project with the goal of exchange of data acquired between the collaborative parties (i.e., FON and co-enrolling partner entity). Rules and regulations related to such a collaborative partnership should be articulated in an individualized partnership statement and approved by the FON Executive Leadership Team.

    • Likewise, communication / marketing strategies for co-enrollment must be reviewed and approved by the FON Executive Leadership Team prior to any marketing, with appropriate co-branding to be approved.

Please fill out the form below to apply for research collaboration: