Emily Reinhardt: “Lifecycle and promotion of a custom patient registry survey with an industry partner”
SHORT SUMMARY
This poster provides an overview of an ACD collaboration with an industry partner to better understand CTD patient oral medication preferences- both the process of partnering as well as the results of the survey.
ABSTRACT
Background: An Association for Creatine Deficiency (ACD) industry partner developing a possible treatment for creatine transporter deficiency (CTD) approached ACD to develop a custom patient registry survey to learn about oral medication preferences to inform the development of their therapeutic.
Methods: 1. Created a data sharing agreement to establish protections for both ACD and the industry partner, and define project services, deadlines, deliverables, and payment schedule. 2. Drafted a survey in collaboration with the industry partner. 3. Consulted with a metabolic dietician to provide guidance on the proposed questions. 4. Gathered feedback from ACD’s Family Advisory Board (FAB). Feedback from the FAB ensured patient and caregiver perspectives were represented in the survey questions and the language was participant-friendly. 5. Developed a recruitment campaign to promote community engagement with the survey
Results: 1. An industry and non-profit data sharing agreement appropriate for future use. 2. A custom oral medication survey. 3. A successful recruitment campaign with high participant engagement surpassing our target goal, with 37 CTD participants completing the survey in the first six weeks. 4. A final data report containing aggregate, de-identified results from the survey. 5. Insights into patient oral medication preferences appropriate for sharing with stakeholders in future drug development efforts. 6. Industry partner support of registry costs resulting in a self-sustaining registry
Conclusions: Development of a custom registry survey can mutually benefit patient advocacy groups and industry partners. ACD observed that survey participants were incentivized to complete the survey by simply knowing that their data had meaningful implications, setting the foundation for future successful survey recruitment strategies.