In 2009, the Sjögren's Foundation launched an initiative to develop clinical practice guidelines for Sjögren's, which aim to:
Improve the quality of care for Sjögren's patients by developing guidelines for the assessment and management of disease manifestations.
Create documents to delineate Sjögren's guidelines for U.S. clinicians.
Obtain broad acceptance of guidelines from key stakeholders, including professional organizations and government agencies.
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 in Sjögren's as well as guidance for caries prevention in Sjögren's.
View and download the Phase 1 guidelines below:
Systemic Manifestations in Sjögren's Patients (PDF - 636 KB)
Oral Management: Caries Prevention in Sjögren's Patients (PDF - 103 KB)
Ocular Management in Sjögren's Patients (PDF - 113 KB)
The Sjögren's Foundation is thankful to all the volunteers who contributed to the creation of the Phase 1 guidelines. A full list of contributors is available here.
The second phase of this initiative will significantly increase the guidance offered on the management and treatment of Sjögren's by addressing the following typics:
Systemic Manifestations in Sjögren's
- Pulmonary; Peripheral nervous system (PNS); Central nervous system (CNS); Lymphoma and other blood cancers; Vasculitis
Data Extraction for Pulmonary Guidelines (Excel - 274 KB)
Oral Manifestations in Sjögren's
- Mucosal management and symptom relief; Use of secretagogues; Caries management and restoration
- Parotid and lacrimal gland swelling
How are guidelines developed?
The Sjögren’s Foundation 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 Sjögren’s Foundation created Consensus Expert Panels, comprised of over 40 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.