WORKING GROUP NAME: Sjogren's Disease

CO-CHAIRS:

Theresa Lawrence Ford:

Atsushi Kawakami:

Maureen Rischmueller:

Olufemi Adelowo:

Hendrika Bootsma:

Valeria Valim:

OMERACT 2020 SIG Session

Wednesday April 22nd 8:30am – 10:00am

 What is Sjögren’s Disease?

Sjögren’s is a systemic autoimmune disease that affects the entire body.  Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas. Nine out of ten Sjögren’s patients are women, the average age of diagnosis is late 40s, although it can occur in all age groups.

The most common symptoms include dry eyes, dry mouth, fatigue and musculoskeletal pain. However, no two people have the exact same set of symptoms so Sjögren’s is often undiagnosed or misdiagnosed. The symptoms of Sjögren’s may mimic those of menopause, drug side effects, allergies, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, physicians, eye care providers and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present.

Sjögren’s is serious but generally not fatal if complications are diagnosed and treated early. Sjögren’s syndrome patients must be monitored carefully for development of internal organ involvement, related autoimmune diseases and other serious complications. In particular, patients should be aware that the incidence of lymphomas (cancer of the lymph nodes) is significantly higher in people with Sjögren’s compared to the general population.

Who takes care of a patient when diagnosed with Sjögren’s?

Rheumatologists have primary responsibility for managing Sjögren’s. Patients are also seen and treated by specialists such as eye care providers, dentists and other specialists depending on a patient’s complications.


What treatments are available?

Currently, there is no cure for Sjögren’s. Prescription medicines are available for symptoms such as dry eyes and dry mouth. A number of over-the-counter products may also be used to alleviate different types of dryness. Immunosuppressive medications are also used to treat the serious internal organ manifestations. 

Are there clinical trials being conducted to improve comprehensive treatment for Sjögren’s?

Research projects are ongoing and involve studying patients in a clinical setting to learn more about their symptoms, what treatments work and under what circumstances, and how best to improve quality of life.

The clinical manifestations most frequently used to date in randomized controlled trials (RCTs) in SjD include the biological, articular, glandular and cutaneous. As stated, the cutaneous manifestations are one of the manifestations resistant to change. Clinical manifestations used for rituximab and belimumab trials included constitutional, cutaneous and pulmonary; two of which are not sensitive to change.  That categories of clinical manifestations insensitive to significant change were included in these trials leads to trial failure.

There is a need to address this issue to support future research.

Is there good news?

Yes! OMERACT has a great international team of volunteers made up of patient partners, clinicians, researchers and policy makers coming from all over the world working to solve this problem!

The aim of this working group is to identify and prioritize symptom domains that should be consistently evaluated in Sjögren’s clinical trials, and to identify aspects of domains and outcome measures that should be part of a concerted research agenda of researchers. Such an effort will help standardize and improve the quality of outcomes, research and ultimately treatment for patients.

STEERING COMMITTEE:

  • Ben Fisher
  • Fai Ng
  • Chiara Baldini
  • Alan Baer
  • Nancy Carteron
  • Katherine Hammitt
  •  Dan Wallace
  • James Witter

 

 

MEMBERSHIP:

  • Jing He
  • Xavier Mariette
  • Marie Wahren-Herlenius
  • Jacques-Eric Gottenberg
  • Raphaele Seror
  • Valerie Devauchelle Pensec
  • Athanasios Tzioufas
  • Patricia Hurley
  • Manuel Ramos Casals
  • Chad Johr
  • Cynthia Lawrence Elliott
  • Maarten de Wit
  • Shelly Kafka
  • Cristina Vollenweider
  • G. Omondi Oyoo
  • Ava Wu
  • Timothy Radstake
  • Astrid Rassmussen
  • Mitali Sen
  • Mercedes Quinones
  • Esen Akpek
  • Peter Tugwell