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Language Matters Survey around Sjögren's Syndrome

Survey

A conversation has recently developed in the international community about the language we use around our disease. A formal Nomenclature initiative has now been developed to address this and is co-led by Drs. Alan Baer in the U.S. and Manuel Ramos Casals in Spain. The BSSA would really appreciate you taking part!

LANGUAGE MATTERS!

AN INTERNATIONAL SJÖGREN’S NOMENCLATURE INITIATIVE

A conversation has recently developed in the international community about the language we use around our disease. A formal Nomenclature initiative has now been developed to address this and is co-led by Drs. Alan Baer in the U.S. and Manuel Ramos Casals in Spain. 

 The Sjögren’s Foundation (U.S.) and Sjögren Europe have been asked to gather the opinion of Sjögren/Sjögren’s patients around the world, so that your voice is included in these discussions.

 Survey questions centre around the following issues: 

  1. Retaining the use of the name “Sjögren” or “Sjögren’s
  2. Retaining the use of “syndrome”
  3. Using “disease” in place of “syndrome”
  4. Using “Sjögren” (no apostrophe) versus “Sjögren’s” (with the apostrophe “s”}
  5. Retaining the use of “Primary” and “Secondary”
  6. If you wish to discard the terms “Primary” and “Secondary”, you will be asked if you wish to use the term “Associated” when Sjögren/ Sjögren’s is diagnosed with another disease

Respondents are asked to rate each answer from 1 (Strongly Disagree) to 5 (Strongly Agree) and then have the option of providing comments. A final opportunity to provide overall comments is provided at the end of the survey. An explanation of the dialogue that is taking place regarding each question and why it is taking place will be included.

We have a short deadline, for which we apologize.

RESPONSES WILL BE accepted UNTIL FRIDAY, 5 AUGUST, 2022, 5:00pm EST.

The Nomenclature committee is planning to provide the results of the survey sent to patients and healthcare providers during the upcoming International Symposium on Sjögren’s Syndrome, taking place in Rome, Italy, 7 September through 10 September, 2022. 

 CLICK THE LINK BELOW TO TAKE PART IN THE SURVEY

 https://www.surveymonkey.com/r/DTNNHKM.

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