Sick Cells hosted the hybrid Empowered Patient Leaders Workshop on June 26, 2025 in Washington, DC and online. This participatory event convened patient leaders, caregivers, providers, patient organizations, and other stakeholders to strengthen their capacity in developing patient-centered core impact sets.
Project Goals
The workshop goals included:
- Participants will understand how Sick Cells adapted the Blueprint for Developing PC-CIS for the sickle cell disease context and what they learned in the process
- Participants will be aware of potential challenges in applying the Blueprint to their disease state and context
- Participants will discuss best practices on how to gather, understand, and share the priorities of the patient community
- Participants will be familiar with and know where to find the resources available to support the development of a PC-CIS for their disease state
Project Summary
Click the image below to download the Final Lay Summary
Project Funding
This convening is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI® Engagement Award (#EASCS-32772). Click the button below to view more information on the Sick Cells PCORI Engagement Award.