Long-form thinking on autoimmune medicine.
Original research, structural analysis and data journalism on the problems we are working to solve. Thinking we want clinicians, researchers and policymakers to cite.
The average wait between first symptoms and a confirmed autoimmune diagnosis in Europe — for some conditions.
Pooled data · European autoimmune registries · 2018–2024
The archive.
Every essay we have published, most recent first. We publish when the thinking is ready, not on a schedule.
Why are we still waiting 7 years to diagnose ankylosing spondylitis?
The average European autoimmune patient sees between five and seven specialists before reaching a confirmed diagnosis.
Read the essay →The Information Problem
Autoimmune disease is, before it is anything else, a problem of missing information. Most of what matters is never written down.
Read the essay →The autoimmune problem, in four figures.
The headline numbers behind why this work exists. These are the structural facts we keep returning to — and the gaps each Observatory essay tries to explore one layer deeper.
of the global population lives with at least one autoimmune condition.
NIH / WHO estimates
distinct autoimmune conditions identified, with overlapping immune mechanisms.
American Autoimmune Related Diseases Association
specialists, on average, that an autoimmune patient sees before diagnosis.
European cohort studies · meta-analysis
higher prevalence in women than in men, across most conditions. Still under-researched.
Lancet Rheumatology · 2023
Where our attention lives.
Four lines of inquiry that shape the Observatory editorial calendar. Each essay belongs to at least one of these — and the questions inside them are the same questions we are answering with the product.
The diagnostic gap
Why some autoimmune diseases take seven years to diagnose and others two. What clinical, structural and data-layer factors close — or widen — the gap. Case studies from European registries.
Cross-disease
Shared genetics, shared mechanisms, shared treatment responses. What we lose when we treat autoimmunity as a hundred isolated conditions — and what becomes possible if we don't.
Toward EHDS 2029
The European Health Data Space is coming into force in 2029. What it changes for secondary use of clinical data, for cross-border research, and for the kind of evidence Europe will be able to generate.
The patient voice
What autoimmune patients actually need from the health system — versus what they get. Drawn from clinical interviews, patient association testimony, and the literature we wish were better.
The diagnostic gap is not a story about medicine failing. It is a story about a data layer that does not yet exist.— Observatory · Essay No. 01