Glut1 Deficiency Foundation
Research Ready Virtual Sessions
The Glut1 Deficiency Foundation is pleased to offer the new Research Ready Series, a special project to build a strong, patient-centered research foundation and increase research literacy in our community.
goals of the series
- educate the community on the importance of patient-centered outcomes research
- increase research literacy and clinical trial readiness
- help ensure research is focused on the needs and priorities of patients
- strengthen relationships and form new partnerships and collaborations across all stakeholders
details
Virtual Sessions:
Virtual sessions on Zoom will include research fundamentals training in approximately 2 hours of time (with breaks). The first three virtual session options will be conducted in English, and the fourth and final session will be in Spanish.
Glut1 Deficiency Foundation Science Director Sandra Ojeda and Special Projects Coordinator Chantal Sanchez will conduct the trainings and have opportunities for participant input and engagement.
Stipends:
A limited number of stipends will be offered for each session, but participation will be open to as many who would like join from any of our stakeholder groups - patients, caregivers, clinicians, researchers, and industry partners - and a stipend is not necessary to take part.
Participation Stipends: $100 for successful completion of the research fundamentals training
- Stipends will be paid upon the successful completion of the training and all related activities (pre-test, post-test, and survey).
- Participants may apply for stipends as part of the registration process and a waiting list will be used as needed.
- Individuals from any location are eligible but should be able to receive stipend payments either via check or PayPal.
Registration:
- Registration is free for all virtual sessions.
- Stipend applications will be included in the registration process.
sessions
virtual
- Session #1: November 4, 2023 - register here!
- Session #2: January 20, 2024
- Session #3: November 9, 2024
- Session #4: January 18, 2025 (in Spanish)
This project is partially funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (#28926).
The Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by federal law in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. The Glut1 Deficiency Foundation is grateful for this opportunity and for the support from PCORI for this project.
This project has been reviewed by Castle Institutional Review Board to protect the rights and well-being of the human participants in this research study.