The Sjögren's Syndrome Foundation is very proud of the leadership role we have taken to encourage collaborations, break down barriers, and move the field of Sjögren's forward.
Below you will find some of the scientific initiatives that are currently taking place or have been recently held.
New Sjögren’s classification criteria
New classification criteria for Sjögren’s were published in the fall of 2016! Classification criteria are for use in clinical trials to ensure that the patient population participating in a drug trial definitely has a disease. As a result, classification criteria are much stricter than diagnostic criteria used for patients in the clinician’s office, and many patients might not fit classification criteria but still be diagnosed as having Sjögren’s.
The latest set of classification criteria have been endorsed by both the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) and were published simultaneously in the ACR journal, Arthritis and Rheumatology, and the EULAR journal, Annals of Rheumatic Disease. This international effort was led by Caroline Shiboski, DDS, MPH, PhD and Stephen Shiboski, PhD, of the University of California San Francisco with other international leaders in Sjögren’s and in conjunction with the International Sjögren’s Syndrome Criteria Working Group. Formerly, two sets of classification were in use: the 2002 American European Consensus Group classification criteria and the 2012 ACR classification criteria.
The Sjögren’s Syndrome Foundation (SSF) brought the international community together by hosting meetings so that Sjögren’s leaders in the U.S. and Europe could agree on one set of classification criteria, paving the way for a clear path to designing and pursuing clinical trials in Sjögren’s. The SSF was honored to be part of this key initiative that will make a tremendous difference for patients and physicians and encourage companies to pursue the development of potential therapies for Sjögren’s.
2016 American College of Rheumatology/European League Against Rheumatism Classification Criteria for Primary Sjögren's Syndrome: A Consensus and Data-Driven Methodology Involving Three International Patient Cohorts.
Click here for Abstract
Clinical Practice Guidelines
The Sjögren’s Syndrome Foundation recently launched an initiative to develop Clinical Practice Guidelines in Sjögren’s. Under the leadership of Frederick Vivino, MD, FACR, Chief of Rheumatology, Presbyterian Medical Center, University of Pennsylvania, this project aims to:
- Improve quality of care for Sjögren’s patients by developing Clinical Practice Guidelines for assessment and management of the systemic manifestations, dry eye and dry mouth that occur in Sjögren’s.
- Create a document delineating Clinical Practice Guidelines in Sjögren’s for U.S. clinicians.
- Obtain broad acceptance of the guidelines by key professional and government organizations.
Three Working Groups have been created to develop Recommendations in their respective fields:
Rheumatology - Chaired by Steven E. Carsons, MD and Ann Parke, MD
Oral - Chaired by Troy Daniels, DDS and Michael Brennan, DMD
Ocular - Chaired by Gary Foulks, MD and Lance Forstot, MD
Specialists in fields such as neurology, psychology, gastroenterology, gynecology and pharmacy are participating as needed, Over 100 volunteer experts are involved to make this major initiative a reality. Watch for more information in The Moisture Seekers and Sjögren’s Quarterly for updates on this initiative.
Clinical Trials Consortium
The mission of the SSF Clinical Trials Consortium (CTC) is:To increase the availability and accessibility of therapies for treating Sjögren’s by:
1. Supporting and promoting objectives that facilitate the design of clinical trials through the development of:
•Internationally-accepted classification criteria
•Internationally-accepted outcome measures
2. Increasing industry partnerships with the SSF
3. Engaging in dialogue with government agencies that oversee therapy approval (FDA, EMA) to develop guidelines for new drug/product approval, speed approval of new therapies for Sjögren's and ultimately ensure corporate interest in drug development
Committee Chair and SSF Board Member: Theresa Lawrence Ford
SSF MSAB Chair and Board Member: Denise Faustman
Simon Bowman (UK); Xavier Mariette (France); Stanley Pillemer (US); Claudio Vitali (Italy); Frederick Vivino (US); Daniel Wallace (US)
The SSF Medical and Scientific Advisory Board set novel diagnostics as a priority for its research grants program starting in 2012. Simpler and more accurate diagnostic tools are critical for moving the scientific and clinical fields forward in Sjögren’s. The SSF already is partnering with several companies that have or are developing diagnostics, and SSF research grantees are focusing on projects that could lead to additional tools for diagnosing Sjögren’s.
Sjögren’s Pulmonary Clinics
March 25, 2013
Sjögren’s is the second most prevalent autoimmune rheumatic disease and affects about 4 million Americans. In addition to affecting the moisture producing glands resulting in hallmark symptoms of dry eye and dry mouth, Sjögren’s can affect any body organ or system. Interstitial lung disease is the most common pulmonary manifestation in Sjögren’s, but pulmonary hypertension, amyloidosis, cystic lung disease and MALT lymphoma can also occur in the lungs.
Few studies have been done in pulmonary manifestations of Sjögren’s, and few pulmonary experts who are also knowledgeable about Sjögren’s have been available to Sjögren’s patients. The Sjögren’s Syndrome Foundation applauds the vision to create Sjögren’s Pulmonary Clinics within the LAM clinical settings to change this. Our hope is that these clinics will provide our patients with expert specialized care and lead to an expanded interest in pulmonary manifestations in Sjögren’s and future studies that will increase our knowledge and improve future care in this field.
The Sjögren’s Syndrome Foundation is pleased to partner with the LAM clinics in this important endeavor.
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 two years, the International Symposium on Sjögren’s 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.
Sjögren's: Transition from Autoimmunity to Lymphoma
The Sjögren's Syndrome Foundation held a basic scientific workshop, Sjögren's: 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.