Interstitial Lung Disease Working Group

Gastrointestinal Working Group Update

Past Projects:  Create an electronic database to assess symptomatic GI involvement at the University of Michigan.

Current Projects/Goals:

1)    Maintain the electronic database (REDCap platform) that can facilitate collaboration among SSc experts around the World for patients with symptomatic GI involvement

2)    Continue data collection in an international working group to validate outcome measures for clinical trials in symptomatic:

  • Gastroesophageal reflux disease (GERD)
  • Gastroparesis
  • Small intestinal bacterial overgrowth (SIBO)
  • Constipation
  • Fecal incontinence (FI)

Progress to date: Most recent results featured at ACR Poster 1248: In this large international cohort, the UCLA GIT 2.0 Reflux scale, PROMIS Reflux scale         , and QoLRAD are sensitive to change, which have been also submitted as a manuscript.

Next Steps:

  • Analyses in other domains are currently limited by power and translation of instruments.

o   Continue recruiting in all in domains at currently enrolling sites.

o   Next manuscript will focus on distention and bloating domains and diagnostic testing results of gastric emptying study and breath testing

How can members get involved? Please contact: