Why your participation counts
In 2001, a 70 year old woman with dry mouth saw her doctor. She was told her condition was a normal part of aging. At that time, Sjogren's syndrome was believed to be a rare disease, affecting only 37,000 people in the US. So the doctor assumed this woman did not have Sjogren's.
And that is what happened to a lot of people. Because these Sjogren's patients were not formally diagnosed with the disease, it remained in the rare disease category. And the doctors continued to misdiagnose patients because they did not have accurate data.
New estimates of Sjogren's prevalence put the number of patients at over 4 million. That's not such a rare disease — and more patients are now being properly diagnosed.
This story demonstrates how data can make a difference. Your data is important.
Through the Autoimmune Registry, you can count... and you can make autoimmune diseases count, too.
Opportunities to participate in research
The key to better diagnosis and treatment of autoimmune disease is clinical research. Participating in clinical research by enrolling in a study is one of the most important contributions you can make as a patient. Click here to see a list of studies currently enrolling patients.