Conquer Chiari is proud to announce the launch of patient centered research as a key part of our research strategy. This approach ensures that the voices, experiences, and priorities of patients and families directly shape the studies we support. By aligning research with what matters most to the Chiari community, we aim to drive more meaningful discoveries and improve outcomes for those affected.
What is Patient Centered Research?
Patient-centered research is an approach that prioritizes the needs, experiences, and preferences of patients and caregivers. It focuses on outcomes that matter most to people—such as improved quality of life, daily functioning, and symptom management—rather than just clinical metrics.
One of the key aspects of patient centered research is that patients are engaged as partners throughout the entire research process. Rather than just being study subjects, patients are key members of the research team and are involved in every aspect of study design, protocol development, and project implementation.
What is the Chiari Research Patient Partner Program?
Starting in 2026, Conquer Chiari will require all research grant recipients to include at least one patient partner on the project team. The Patient Partner Program is a way for patients and caregivers to receive training on Chiari, research methods, and the status of Chiari research in order to maximize their participation in the research process.
Patient Partners will also have a role in establishing Conquer Chiari's research goals and objectives on an ongoing basis.
How do I become a Patient Partner?
The program is open to any Chiari patient, parent, or caregiver (age 18+) who is willing to volunteer their time, and commit to the required training. There are two levels of certification. Each level requires watching specific video courses in the Chiari Academy and then demonstrating knowledge through a short quiz. The specific steps are detailed in the sidebar on the left of this page.
Questions about the Patient Partner Program can be sent to director@conquerchiari.org.