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
Focusing on understanding symptoms, comorbidities, and individualized therapy responses, defining subgroups, and using data to drive research and public policy efforts.
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.
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).
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.
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.
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.
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).
Even within the same diagnosis, no one disease presentation or progression is created equal. Yet too many therapies, recommendations, and access regulations base guidance on a general patient population. We are working to fight for research and innovation to improve therapeutic responses, increase remission rates, and lower healthcare costs.
Each year we attend the two major rheumatology scientific conferences (ACR & EULAR). Join us to learn what we learn, ask questions, and improve your knowledge about our diseases. This experience also can help improve your knowledge of the process of research, and efforts to improve lives with both pharmacologic and non-pharmacologic options.
Education about trials, including tips and advice for participating in them. We have also launched a NEW, FREE RESOURCE! The Patient-Led Clinical Trial Shared-Decision Making Guide. Use before discussing with your doctor, during discussions, or after to help you make an informed decision about participating.
2013-2014 Patient-Led Study (with professional researchers as advisors) that compared patient-reported early disease symptoms in 6 diseases (RA, PsA, AS, AOSD, SS), demonstrating the inaccuracy of what patients report and what is listed in professional publications.
We are always collecting data, which will be entered into our new AiArthritis Database (housed by FORWARD Databank), to better understand disease subgroups in order to use data to influence access to treatments based on individual needs. See an example: A Community Team II Award-Winning project.
Established to address these issues by focusing on understanding symptoms, comorbidities, and individualized therapy responses, defining subgroups, and using data to drive public policy efforts.
International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
Tax ID: 27-1214308
Copyright 2024. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. 501(c) 3 Nonprofit Tax ID: 27-1214308.