Lung Disease Working Group

Summary of goals/project(s) of working group:

  • To define progression of SSc-ILD of disease

  • To determine what proportion of SSc patients have progression of their ILD after 7 years

  • Longer-term goal is to harmonize inclusion criteria for SSc-ILD clinical trials

Progress to date for working group:

Drs. David Roofeh and Andrew Lewandoski, rheumatology fellows at the University of Michigan,Drs. David Roofeh and Andrew Lewandoski, rheumatology fellows at the University of Michigan,are leading the effort to define progressive SSc-ILD, as part of their larger effort to defineprogressive CTD-ILD. They performed a literature review and proposed definitions ofprogressive SSc-ILD. They then contacted 40 experts in CTD-ILD (18 pulmonologists, 15rheumatologists, and 7 radiologists) via email, phone, and interactive teleconference. Expertswere asked for their critical feedback of these proposed definitions, and invitations to proposetheir own definitions of progressive SSc-ILD via email. These changes were incorporated andsubsequently revised after 3 teleconference calls, with a discussion focusing on further refiningthese definitions.

Next steps:

The next step is to operationalize the definition of progressive SSc-ILD and to develop a consensus definition. Drs. Roofeh and Lewandoski will provide ILD experts in pulmonology, rheumatology, and radiology with 20-30 real-life examples of SSc-ILD patients with longitudinal data. Their task will be to use the data provided to categorize patients as either progressed or not progressed, or unable to determine and what components/domains influence this decision.

What are expected deliverables and timelines for grant/working group?

  • Apply for SCTC grant – by April 2019
  • Develop patient profiles – by June 2019
  • Survey 40 ILD experts – by September/October 2019
  • Submit abstract to ACR meeting – June 2020
  • Submit manuscript to journal – by October 2020

Note: expected timeline is subject to change

Contact information:

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