"More than 4mm Americans are living with Sjögren's, a systemic autoimmune disease that affects the entire body. Nine out of ten patients are women. Let me repeat this: 9/10 patients are women. Kathy Hammitt, Chair of the TFOS Public Awareness & Education Subcommittee, is Vice President of Medical & Scientific Affairs at Sjögren's Syndrome Foundation in Washington, DC. A patient herself, she is a strong advocate for change, overseeing SSF’s key research and medical initiatives to increase our knowledge about Sjögren’s, improve the exchange of ideas to accelerate research, and set the stage for better treatment and management of Sjögren’s through awareness and fund raising. Her battle has just begun. Read our interview here."

-Dominica Drazal

Director, TFOS Global Ambassador Program

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 

Did you miss our 2016 National Patient Conference?  

The most popular talks from the 2016 SSF Conference are available for purchase as audio CDs. Each talk is 30-40 minutes long and comes with the handouts used by the presenter so you can follow along with the talk.

Presentation topics include:

  •   • Sjögren's Overview 
  •   • Oral Manifestations of Sjögren's 
  •   • Dry Skin and Dermatological Issues 
  •   • An Inside Look at Sjögren's & Gluten-Free Diets 
  •   • Ocular Manifestations of Sjögren's 
  •   • Sjögren's - Where Are We in Drug Development?
  •   • Gynecological Issues with Sjögren's 
  •   • Examining Sjögren's - Case by Case 
  •   • Fatigue and Sjögren's  

Member Price: 
$18
Non-Member Price: $30 
(You must be logged in to purchase at the Member Price. Double check that you are receiving the correct price before finalizing your purchase.)
 

 

The SSF is excited to announce the publication of the first U.S. Rheumatology Clinical Practice Guidelines for Sjögren's.

Published in Arthritis Care and Research, these rheumatology guidelines were designed to improve quality and consistency of care for Sjögren's patients by offering clinicians recommendations for disease management. Among the recommendations, the guidelines address issues such as the use of biologic agents, management of fatigue, and inflammatory musculoskeletal pain in systemic Sjögren's. Click here to read more.

View Guidelines Published in the Rheumatic Diseases Clinics of North America

SSF Clinical Practice Guideline's

Overview

In 2009, the Sjögren’s Syndrome Foundation launched an initiative to develop Clinical Practice Guidelines for Sjögren’s, which aim to:

  1. Improve the quality of care for Sjögren’s patients by developing guidelines for the assessment and management of a variety of disease manifestations.
  2. Create documents to delineate Sjögren’s guidelines for U.S. clinicians.
  3. Obtain broad acceptance of guidelines from key stakeholders, including professional organizations and government agencies.

Phase 1

Completed in 2015, Phase 1 of this initiative resulted in the development of the first U.S. guidelines for the management and treatment of systemic and ocular manifestations of Sjögren’s as well as guidance for caries prevention in Sjögren’s.

View and download the guidelines created through Phase 1 below:

The SSF thanks all who contributed to the creation of the Phase 1 guidelines. A full list of contributors is available online.

Phase 2

The second phase of this initiative will significantly increase the guidance offered on the management and treatment of Sjögren’s. The following topics will be addressed in Phase 2:

Systemic Manifestations in Sjögren’s
(Pumonary; Peripheral nervous system (PNS); Central nervous system (CNS); Lymphoma and other blood cancers; Vasculitis)

Oral Manifestations in Sjögren’s
(Muscosal management and symptom relief; Use of secretagogues; Caries management and restoration)

Ocular Manifestations in Sjögren’s
(Update and expand on the ocular guidelines developed in Phase 1 and TFOS DEWS II Report)

Cross-cutting Topics
(Parotid and lacrimal gland swelling)

 Developing Guidelines

The SSF consulted with other professional organizations, including the American College of Rheumatology, American Dental Association, American Academy of Neurology, consultants from the American Society of Clinical Oncology and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology system to devise a transparent and rigorous guidelines development process. This process informed all aspects of guideline development, which includes drafting clinical questions, pre-selecting parameters for acceptable studies, literature searches, data extraction and using a Delphi-type approach to gain consensus for recommendations. For consensus, the SSF created Consensus Expert Panels, comprised of at least 30 professional experts and patients, who reviewed, voted and provided input on recommendations. A minimum of 75% consensus is needed in this step of the process.