The Johns Hopkins Sjögren’s Disease Registry is our branch of SPARC, the Sjögren’s Partnership for Accelerating Research Collaboration. It is a comprehensive database used to accelerate research, improve care, and move closer to new treatments for Sjogren’s. It is comprised of approximately 50,000 patients from across the United States who are either diagnosed with Sjogren’s, or have key symptoms, such as dry eyes and dry mouth.
Purpose
What participants share matters. Registry data has helped researchers:
- recruit volunteers for clinical trials
- investigate what causes different symptoms
- measure how common symptoms are and predict likely outcomes
- track disease progression and responses to care
- support the development of Sjogren’s-specific medications
Study Design
Participants may be asked to provide questionnaire answers about their daily experiences and, in some cases, blood samples. We make participation as easy as possible. Our team will usually discuss the registry during your routine clinic visit, so no extra travel or special appointments are required.
There is no cost to the study, and your participation is completely voluntary. Johns Hopkins protects your private health information and identifying patient details are never shared. By joining the registry, you help researchers and clinicians build greater knowledge and a more hopeful future for everyone affected by Sjogren’s.
