Research

Our Role in Research


We address patient-identified issues by creating patient-infused solutions. Our Research initiatives aim to identify therapies that work best for disease subgroups & based on individual needs, expedite detection & diagnosis, influence legislation, & increase patient knowledge of and participation in research. These efforts sometimes cross over into our Education/Awareness & Advocacy/ Policy initiatives.


Patient-Led Initiatives - The research projects we lead or participate in are based on patient-identified needs and patient-infused solutions. Led by patients, we work with research professionals as our advisors.


Patient-Research Collaboration - We are leaders in advancing patient voices in research by participating as patient research partners (PRPs) on projects worldwide and by helping match other patients to the same opportunities


Research Priorities for 2025

Research Advocacy/AiArthritis Research Data Bank

Focusing on understanding symptoms, comorbidities, and individualized therapy responses, defining subgroups, and using data to drive research and public policy efforts.

Patient Involvement in Research

In addition to serving as patient research partners, advisors, and clinical trial grant reviewers, we act as a bridge between stakeholders and a global pool of patients so all persons diagnosed with these diseases have a voice in research.

"Go With Us!" to Research Conferences

Peer-led research reviews and interactive Q & A sessions to help our community learn of the latest studies and therapeutic evolution. Associated with our Go with Us to Conferences program (ACR/EULAR).

Improving Health Technology Assessment Processes

Data used to determine fair drug pricing is based on clinical trial data that lacks evidence from real patient populations. Real world evidence & patient experience data must be prioritized when establishing value.

Undiagnosed/Undifferentiated Disease/Pre-Clinical

We advocate and educate about the importance of early detection, diagnosis, and connecting to early therapeutic intervention to improve outcomes. However, 50% of patients start as either a "mystery"/undiagnosed or Undifferentiated Disease. We are dedicated to identifying them and connecting them to early treatments.

Precision Medicine/Biomarkers

We are leaders in precision medicine in the autoimmune/autoinflammatory space, teaching patients about its importance, advocating for subgroup research, and fighting for access to biomarker testing in the clinical setting.

Clinical Trial Education

In addition to educating patients about clinical trials and shared-decision making associated with making that choice, we will continue our work towards preparing for future trials - particularly those that include all people (not only the general patient population samples).

Featured Work

Our work is based on conversations, problem-solving, and action. Our voices drive what we do - not only as a story to enhance our work, but also as the reason why we choose our initiatives and how we accomplish our goals. 


Learn more about these projects and how YOU can ensure your voice counts!