Family-Centered PFD Research Consortium FAQs
When are the meetings? (frequency/duration)
Consortium Members will be meeting monthly in the first year, starting in March 2024, while leaders of the consortium (as determined in governance) will meet monthly. These meetings will be 1-hour in duration and in established recurrence based on the joint availability of the consortium members.
What should I expect in meetings?
Prior to each consortium meeting, the Project Team will send out an agenda that will outline the topics and action steps that will be discussed.
What are the goals/purposes of the consortium meeting?
The consortium will inform potential research. Primarily, the goals are to engage and inform capacity.
What is the expected project impact?
Expected Project Outcomes and Impact: The proposed Family-Centered PFD Research Consortium holds significant potential for generating meaningful outcomes and making a substantial impact in the field to build capacity for PFD research.
If someone is interested in joining the consortium, what are next steps?
Feeding Matters held an informational webinar on February 15, 2024. You can view a recording of the webinar here. After watching the webinar, if you are interested in joining the consortium, please fill out this form by Thursday, February 22, 2024.
If a family is interest but cannot commit to attending in-person in 2025,
are they disqualified from joining as a consortium member?
No, you can be a member of the consortium without committing to in-person attendance at the 2025 IPFDC. However, if you desire/plan to become a consortium leader, this is a requirement. See job descriptions below.
Job description for consortium members
Consortium Members would be expected to participate in meetings (held every 1-2 months) and complete training on Patient Centered Outcomes Research/Comparative Effectiveness Research (PCOR/CER), research fundamentals, ethics of human subjects research, benefits of multi-stakeholder engagement, and the state of PFD research. This will allow Consortium Members access to information about research fundamentals and PFD research to grant them the necessary foundational knowledge to support future decision making. It is a 2-year commitment and Members will be compensated for their time. Members would have an option to attend an in-person International Pediatric Feeding Disorder Conference in 2025 with registration and travel paid. Consortium Members will interact online and will need to establish and adhere to principles of trust, respect, and integrity.
Over the 2-year period, consortium members can expect:
- 18, 1-hour meetings
- 15 hours of training
- 1 in person conference (optional)
In that time, The consortium will:
Job description for consortium leaders
With support and facilitation from the project team, the consortium members will identify, recruit, and confirm leaders who will play key roles within the consortium. Consortium Leader would be expected to participate in monthly meetings and complete training on Patient Centered Outcomes Research/Comparative Effectiveness Research (PCOR/CER), research fundamentals, ethics of human subjects research, benefits of multi-stakeholder engagement, and the state of PFD research. This will allow leaders access to information about research fundamentals and PFD research to grant them the necessary foundational knowledge to support future decision making. It is a 2-year commitment and leaders would be compensated for their time. Leaders would be expected to attend the in-person International Pediatric Feeding Disorder Conference in 2025 with registration and travel paid. Consortium leaders and members will interact online and will need to establish and adhere to principles of trust, respect, and integrity.
Over the 2-year period, consortium leaders can expect:
- 23, 1-hour meetings
- 15 hours of training
- 1 in person conference
The Feeding Matters Family-Centered PFD Research Consortium launch was partially funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-31710).