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

Prioridades de investigación para 2026

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

Revisiones de investigación dirigidas por pares y sesiones interactivas de preguntas y respuestas para ayudar a nuestra comunidad a conocer los estudios más recientes y la evolución terapéutica. Este programa está asociado con nuestro programa "Acompáñanos a las conferencias" (ACR/EULAR).

Mejora de los procesos de evaluación de tecnologías sanitarias

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

Promovemos y educamos sobre la importancia de la detección y el diagnóstico precoces, así como sobre la conexión con la intervención terapéutica temprana para mejorar los resultados. Sin embargo, el 50 % de los pacientes comienzan con una enfermedad de origen desconocido, sin diagnóstico o con una enfermedad indiferenciada. Nos dedicamos a identificarlos y a conectarlos con tratamientos precoces.

Medicina de precisión/Biomarcadores

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).