About the Sjögren’s Disease Working Group

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.

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.

McCoy_Sara_MD_headshot[35]

Sara McCoy

Co-Chair

Raphaele Seror

Co-Chair

Simon Bowman

Co-Chair

Maureen Rischmueller

Co-Chair

Nathan Foulquier

Fellow

Kathy Hammitt

Patient Research Partner

Working Group Publications

Working Group Members:

Abdelgaffar Mohammed
Adrian Lee
Ahmed Seri Ibrahim Mohamed
Alan Baer
Alberta Hoi
Alena Piatrova
Alexandre Dumusc
Amir Rezaee
Anat Galor
Andre Franco
Angelica Gattamelata
Ann Eldred
Anna Stevens
Annette McKinnon
Antoine Rousseau
Antoine Sreih
Antonia Christodoulou
Antton Egon
Anupam Wakhlu
Arthur Bookman
Arun S. Varadhachary
Astrid Rassmussen
Athanasios Tzioufas
Ava Wu
Aya Akmal Amin
Ben Fisher
Beverley Shea
Blake Warner
Carlos Guillen Astete
Caroline Shiboski
Catherine Hofstetter
Chadwich R. Johr
Chiara Baldini
Coralie Bouillot
Cristina Vollenweider
Cristina Montoya
Cristina Pelkas
Cynthia Lawrence Elliott
Dana DiRenzo
Daniel J. Wallace

David Isenberg
Delaney Ding
Denise Bury
Denise Kruzikas
Denise Mervis
Denise Smith
Diego Cantali
Divi Cornec
edoardo marrani
Eléanore Bettacchioli
Elena Bartoloni Bocci
Elena Garcia Guijarro
Ellen Wang
Esen Akpek
Esther Francisca Vicente-Rabaneda
Fabiola Reis Oliveira
Fai Ng
Fernando Saraiva
Frederic Lavie
G. Omondi Oyoo
Gabriela Tabaj
Gaetane Nocturne
Gary Choque
Gehad Maghraby
George Bruyn
Ghaith Noaiseh
Ghaydaa Dabie
Giuseppina Stifano
Hanna Zembrzuska
Hendrika Bootmsa
Ian Saldanha
Ilfita Sahbudin
[email protected]
Ingrid De Groot
Ingrid Moller Parera
ingrid moss
Inna Gaydukova
Ionut Pintilie
J.F. van Nimwegen
Jacques-Eric Gottenberg

Jan René Nkeck
Jane Wells
Jane Zochling
Janet Gunderson
Janet Haimowitz
Janicke Cecilie Liaaen Jensen
Javier Rios
Jean-Noel Talabardon
Jeffrey Stewart
Jose Alexandre Mendona
Jose Luis Andreu
Kapil Garg
Karen Natali Saravia Chocobar
Karen Nowak
Karina Torralba
Kategia Binion
Katerina Bouchalova
Kathy Hammitt
Kelly Nichols
Khaled Abdelsalam Abdelgalil
Khaled Saadaoui
Kimberly Legault
Konstantina Delli
Kris Arnaud
Krystyne King
Kyung Min Ko
Lays De Souza
Lene Terslev
Leslie Laing
Liliia Shvets
Lizeth Chaparro Del Portillo
Luca Iaccarino
Luca Quartuccio
Madusha Menu Cristeen Jayasinghe
Manel Ramos-Casals
Marc Antoine Rousseau
Marc Labetoulle
Maria Antonietta d'Agostino
Maria Queiroz
Maria Teresa Romero de Albrecht

Marie Orliaguet
Marie Wahren-Herlenius
Marjolaine gosset
Masahiro Komori
Matilde Bandeira
Maureen Rischmueller
Mauricio Castro
Maxime Beydon
Maxine Isbel
Melitza Iglesias
Mercedes Quinones
Michael Brennan
Michael H. Goldstein
Michela Montecchi-Palmer
Michelle Catalina
Mina Massaro-Giordano
Minerva Mendoza
Nancy Carteron
Nathan Foulquier
Nevsun Inanc
Nicoletta del Papa
Nino Tsiskarishvili
Nishant Gupta
Oliver Kramer
Olufemi Adelowo
Panagiotis Ermeidis
Patricia Hurley
Peter Tugwell
Philip Mease
Phyllis Bass
Pilar Brito-Zeron
Primal Kaur
Rachel Gordon
Raouf Hajji
Raphael Porcher
Raphaele Seror
Rebecca Lobo
Reinhard Voll
Roberta Priori
Roberto Giacomelli

Roy van Heesbeen
Sandra Pasoto
Sandrine Jousse-Joulin
Sanjeev Roy
Sara McCoy
Sasikala Bheemireddy
Sezan Karakus
Sharmila Masli
Simon Bowman
Sonja Krosser
Soumya Chakravarty
Stefano Barabino
Suellen Lyne
Susan Goodman
Susan Pretko
Suzanne Arends
Sylvie Boisram
Tamer Gheita
Teodora Serban
Theresa Lawrence Ford
Thomas Grader-Beck
Thomas Lehman
Tiffany Westrich-Robertson
Tina Papas
Valeria Manfre
Valeria Valim
Valerie Devauchelle
Vandana Pradhan
Vasco Romao
Vatinee Bunya
Vibeke Strand
Vidya Sankar
Viktoria Fana
Virginia Moca Trevisani
Wen-Hung Chen
Xavier Mariette
Yann Nguyen
Yeonhew Kim
Yuya Imai
Yuzaiful Yusof

Interested in joining the working group as a member?

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In addition to joining our mailing list, we also encourage you to become part of our active Working Groups. Being part of these groups is an opportunity to collaborate with experts in the field, contribute to important discussions, and influence the future direction of rheumatology outcomes research.
We look forward to your valuable contributions and active participation in our community.

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