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

Update (2020):

The Working Group consists of 9 organ system involvement subgroups, each with one leader and 3-5 SCTC subgroup members.  In 2019, each subgroup developed a definition of organ system involvement (skin, peripheral vascular, joint/tendon, skeletal muscle, gastrointestinal tract, lung - pulmonary arterial hypertension, lung – interstitial lung disease, heart and kidney).  These definitions have been revised/refined in meetings with the Co-Chairs.

During 2020, the proposed definitions have been reorganized into a standard format and shared among all subgroups for their commentary and feedback in order to reach consensus.  We are planning to conduct a Delphi exercise, inviting participation of the entire SCTC membership, to obtain a broader perspective.  In addition, along with subgroup leaders, we are writing an editorial about the need to standardize definitions of disease onset and organ system involvements in diffuse cutaneous systemic sclerosis (dcSSc), which is the subject of numerous ongoing and proposed clinical trials.

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