Scientific Initiatives

The Sjögren's Syndrome Foundation is very proud of the leadership role we have taken in the field of Sjögren's syndrome.

Below you will find various scientific initiatives that are currently taking place or have been recently held.

Clinical Practice Guidelines
The Sjögren’s Syndrome Foundation launched an initiative in 2008 to develop Clinical Practice Guidelines in Sjögren’s Syndrome. Under the leadership of Frederick Vivino, MD, FACR, Chief of Rheumatology, Prebyterian Medical Center, University of Pennsylvania, this project aims to:

  1. Improve quality of care for Sjögren’s syndrome patients by developing Clinical Practice Guidelines for assessment and management of the systemic manifestations, dry eye and dry mouth that occur in Sjögren’s.
  2. Create a document delineating Clinical Practice Guidelines in Sjögren’s syndrome for U.S. clinicians.
  3. Obtain broad acceptance of the guidelines by key professional and government organizations

Watch for more information in The Moisture Seekers and Sjogren’s Quarterly for updates on this initiative.


Clinical Trials Consortium
In order to encourage the development of new therapeutics for Sjögren’s syndrome, the Sjögren’s Syndrome Foundation has formed a Clinical Trials Consortium. This initiative is led by Elaine Alexander, MD, PhD, a rheumatologist and biomedical consultant, and aims to:

  1. Increase the accessibility and availability of drugs/ products for the treatment of Sjögren’s syndrome (SS) for:
    • Existing drugs not currently approved for SS but of potential benefit (i.e. additional clinical indications or labeling).
    • Drugs in clinical development for SS.
    • Drugs in clinical development for other indications that also would be useful in SS.
  2. Facilitate more clinical trials in SS (Phase I-III studies of novel compounds or Phase IV studies of medications approved for other indications).
  3. Support the development of validated internationally-accepted outcome measures in SS to facilitate progress in increasing promising new therapies for SS.
  4. Increase industry partnerships with the SSF.
  5. Engage in continued dialogue with the U.S. Food and Drug Administration (FDA) to develop guidelines for new drug/product approval.

The International Sjögren's Registry
An initiative to gather information and samples on Sjögren's patients that will have a tremendous impact on future Sjögren's research. Visit the Sjögren's Syndrome International Collaborative Clinical Alliance (SICCA) website for more information and see if you are qualified to participate.


International Symposium on Sjögren’s Syndrome (ISSS)
Taking place every four years, the International Symposium on Sjögren’s Syndrome brings together the foremost minds in the fields of Sjögren’s. By sharing the latest research and developments in the field, we hope to help foster future research on Sjögren's. The Sjögren’s Syndrome Foundation hosted the IXth ISSS on April 27-29, 2006 in Washington, D.C., marking the event's 20th anniversary.

The Xth ISSS is just around the corner, taking place in Brest, France October 1-3, 2009. Visit the syposium's website at http://www.sjogrensymposium-brest2009.org/ for more details about the upcoming event.


Sjögren's syndrome: Transition from Autoimmunity to Lymphoma
The Sjögren's Syndrome Foundation held a basic scientific workshop, Sjögren's syndrome: Transition from Autoimmunity to Lymphoma, to investigate the link between non-Hodgkin's B-cell lymphoma and Sjögren's syndrome. This interactive event promoted rigorous discussion about potential triggers in the transition from autoimmunity to lymphoma, fostered exchange of scientific data, and catalyzed future research in this important area.