This presentation will discuss factors that associate with outcomes in this population, with a focus on physical activity and social determinants of health.
The panel of speakers will explore the principles of authentic partnerships, including connection and commitment, creating safe spaces, valuing diverse perspectives, and fostering open communication. They will also discuss how these partnerships function in practice and what transparency looks like in research.
This presentation will explore lessons learned from a mixed-methods study that evaluated patient engagement in the INFORM RARE pediatric rare disease research network, focusing on how the evaluation was co-designed and the methods used to go beyond process evaluation.
