Definitions Of Disease Onset & Organ System Involvement Working Group

Goal of Working Group:

To develop guidelines to increase the comparability of observational studies and/or clinical trials in SSc with regard to:

  • defining the time of onset of SSc
  • recommending criteria for determining if an individual organ system is affected by SSc “with a reasonable degree of certainty”
  • defining the time of onset of individual organ system involvements in SSc

Progress to Date

  • formed a committee of 20 individuals (6 leaders and 14 members)
  • assigned 1 leader and 3-4 members to develop preliminary criteria/guidelines for each of 10 organ systems frequently affected by SSc

Next Steps (Timeline)

  • leaders submit 2-5 possible criteria from their working subgroup (March 2019)
  • full working group discusses subgroup submissions and attempts to reach consensus (summer 2019)
  • working group directors and leaders develop manuscript for publication (late 2019-early 2020)

Contact information for how can members get involved:

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