The Lonely Universe Of Autoimmune Diseases

How would you feel if, after years of searching for a diagnosis you finally found out you have an autoimmune disease, and then you realize that your doctors will have to experiment on you to find the right treatment? That’s the state of the art today in autoimmune diseases like Crohn’s, lupus, and MS.

At least 50 million Americans (twice the number of cancer patients) suffer from autoimmune diseases. Each of the 90 or more named diseases is represented by a variety of stakeholders, (patients, specialists, researchers), with little sharing of data across groups, and even less across diseases.

Cancer (and rare disease) communities are already moving to collect, share and derive useful information from data. However, despite the similarities (such as unmet needs, heterogeneous diseases, poor diagnostics), the “autoimmune communities” lag some 50 years behind cancer R&D in data collection, sharing and analysis, and therefore, improved diagnoses and treatment. Why have autoimmune diseases been neglected?...