One Registry, Countless Voices: Rethinking Autoimmune Data Together
From June 16–18, the Smart Patients community hosted an Ask the Expert session with Aaron Abend and Ingrid He of the Autoimmune Registry, an independent nonprofit that’s working to build a shared resource for patients, researchers, and clinicians. The goals of the session were to explain what the Registry is and how it works, and to listen to our members’ ideas about what patients actually need from large-scale data collection efforts like this one.
What Is the Autoimmune Registry?
The Autoimmune Registry is perhaps the only initiative taking a comprehensive approach that focuses on all autoimmune conditions, from rare diagnoses like transverse myelitis to more common conditions like rheumatoid arthritis. This encompassing vantage point creates an opportunity to look for patterns that cross disease boundaries—including symptom overlap, patient histories, and comorbidities that often get overlooked in siloed care systems.
After introductions, the focus shifted. What began as a simple overview of the Registry quickly turned into a more dynamic and revealing discussion about what patients actually need it to become.
Lived Experience Meets Medical Data
Frustrations with Fragmented Care
Participants presented an array of thoughtful, sometimes hard-hitting questions and suggestions. Several expressed frustration with fragmented care, where different specialists, radiologists, and labs failed to communicate about a shared medical history. Others spoke about being dismissed by clinicians for presenting “too many symptoms,” even though they know from experience that living with multiple autoimmune conditions is far more common than most people realize.
Sjögren’s Disease as a Case Study
Sjögren’s disease—one of the most under-diagnosed autoimmune conditions—quickly became a focal point in the discussion. This came as no surprise. It remains one of our most active communities, created to meet the pressing need for patients to connect, be heard, and support one another. Many are navigating a complex web of symptoms that are too often ignored or misattributed. In the graphic, data from the Autoimmune Registry reveal how overlapping co-morbidities blur diagnostic lines—highlighting how vital it is to recognize patterns across conditions to improve diagnosis, treatment, and understanding.
Patients Shaping the Questions That Matter
Quality of Life as a Core Outcome
The most powerful part of the Ask the Expert session was how the questions themselves spurred ideas for future research. As one community member put it, “Quality of life is the top priority for most patients.” That single statement expands what outcomes should matter in a disease registry. It’s not just antibody levels or lab results, but fatigue, pain, and daily functioning.
Patients also shared their lived experiences, sparking practical innovation. One member used the Autoimmune Registry’s current website data to create side-by-side quality of life comparisons between lupus and Sjögren’s patients. That moment captured what we’re striving to make standard: enabling patients to use their own expertise on their conditions to influence research priorities, data presentation and the design of tools that truly serve their needs. Others asked about how the Autoimmune Registry could evolve to overcome challenges with diagnostic uncertainty, miscommunication among specialties, and chronic symptoms.
Community Ideas for Registry Innovation
Could patients’ diagnostic narratives be linked to the disease profiles so that the information has real-world context?
Could data or information on ruled-out or mis-diagnoses be captured to highlight delays and improve early recognition?
Could longitudinal health data and imaging be captured to enable AI to better aid in diagnostics and identifying disease progression? This could also give patients a way to track physical changes over time and provide richer context to healthcare professionals.
These weren’t theoretical musings. To help navigate their complex care paths, our members requested more human-centered and clinically useful tools to integrate qualitative, visual, and narrative data. We learned once again that people living with illness are often ahead of the system in identifying its blind spots.
At a time when autoimmune disease research is often siloed, underfunded, and disconnected from lived experiences, there’s a clear appetite for tools that center patients’ realities, not just track their lab results. So why not put patients in the driver’s seat of meaningful innovation?
What’s Ahead for the Autoimmune Registry?
There’s no shortage of ambition at the Autoimmune Registry. In the coming months, they plan to roll out disease-specific surveys and launch a Dashboard tool to help participants compare their experiences to aggregated results across the Registry. They’re also exploring integration with electronic health records and planning for long-term use of AI and machine learning to uncover diagnostic and treatment insights.
Join the Conversation and the Registry
Join the Autoimmune Registry Community at Smart Patients to connect with others and influence the future of research. Or enroll in the Autoimmune Registry to contribute your voice to the data. Together, we can change the way autoimmune disease is understood and treated.
If you’re interested in reading more or contributing to the Registry, you can explore their disease profiles or learn how to enroll here.
If you or a loved one has an autoimmune disease, we welcome you to join the Autoimmune Registry Community at Smart Patients—a place to connect, share experiences, and learn from others navigating similar challenges.