AiArthritis Research Database

As an organization led by people affected by Autoimmune and Autoinflammatory Arthritis (AiArthritis) diseases, we believe expedited diagnosis and access to early and effective therapy is vital to improve outcomes and increase rates of remission. The AiArthritis Research Database was 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. 

In addition to research within the database, AiArthritis will expand our initiatives to include associated peer-led education and "elevated experiences" opportunities to:

• Learn how the research can impact the participants lives and the betterment of our community (peer-led education)
• Join peer-led discussion groups or surveys to expand on data collected

Our database was built by and is housed within FORWARD: the National Databank for Rheumatic Diseases.

IgG4-RD Prevalence in Association with AiArthritis Diseases. In partnership with FORWARD: the National Databank for Rheumatic Diseases (NDB), we are conducting a survey to assess those already enrolled in the NDB - in conjunction with those AiArthritis recruits into our sector of the database - to better understand IgG4-RD as a comorbidity that may occur with our diseases.  Through our "Go With Us!" to Conferences program, AiArthritis realized IgG4-RD sessions and abstracts often referred to its association with Sjogren's Disease, Rheumatoid Arthritis, Lupus, and Sarcoidosis. This led to questions about it's prevalence and rarity. In addition to this study, we also have a coordinating awareness campaign, "AUTO + Inflammatory Arthritis = X (our diseases) OR Y (IgG4-RD) OR Z (Fibromyalgia)." This project was made possible by Horizon Therapeutics.

Undifferentiated Disease/Undifferentiated Connective Tissue Disease to AiArthritis Disease Diagnosis. While past estimates of the prevalence of those who program from Undifferentiated Disease to an AiArthritis disease was 15% (2012), more recent estimates are 30% (EULAR 2023). However, in 2013, based on our own peer-to-peer conversations and lived experiences, AiArthritis challenged this number - theorizing it's closer to 50% (as many do not get ANY diagnosis, yet their symptoms would classify as UCTD). In our Early Symptoms of AiArthritis Study that surveyed over 800 people from around the world, our findings showed while 15% were initially diagnosed with UCTD, an additional 39% had no diagnosis, yet their symptoms could have warranted such a diagnosis (bringing the total to 54%). 

In our fight to expedite diagnosis and connect patients to early therapeutic intervention, we are partnering with the NDB to track those diagnosed with Undifferentiated Disease AND those who are seeking a diagnosis but who are left without answers, to determine the true prevalence of UD/UCTD and help connect patients to answers faster. This work will also enable AiArthritis to capture diagnosis in real time and identify patients early in their disease journey - and possibly recruit them to participate in additional research. This initiative is made possible through public support for research.

Subgroup Discovery and Data to Influence Public Policy. As we recruit more patients to our database, we will begin exploring commonalities and differences among those with the same diagnosis, with the goal to establish subgroups (in preparation for precision medicine and to use to influence biomarker testing legislation in the non-cancer space). Additionally, we will survey participants regarding challenges with therapy - and associated costs/quality of life issues - as a result of utilization management practices. This data will be used to supplement our work to fight against Step Therapy, Prior Authorization, Non-Medical Switching, and Price Setting and fight for continuity of care and innovation. This initiative is made possible through public support for research.