An observational study in Systemic Sclerosis, sponsored by Assistance Publique - Hôpitaux de Paris. Completed at 1 site in France. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-03-27.
Sponsored by Assistance Publique - Hôpitaux de Paris · Observational
The purpose of this study is to create and validate an ICF core Set for Systemic sclerosis
In 2002 was published WHO's International Classification of Functioning, Disability and Health (ICF). ICF defines disability as "the negative aspects of the interaction between an individual (with a health condition) and that individual's contextual factors (personal and environmental factors)". Interactions are specified in five domains, classified from body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and participation. Since an individual's functioning and disability occurs in a context, the ICF also includes a list of environmental factors.
ICF core sets, which are short lists of ICF categories relevant for specific conditions, serve as practical tools for clinical practice and allow standardisation of data for health information and research. Core sets have already been developed and validated for several musculoskeletal diseases, such as low back pain, osteoarthritis, or osteoporosis, but not yet for systemic sclerosis.
688 studies on the registry are indexed under Scleroderma, Systemic; 223 are open to participants now.
This study's enrollment of 113 is above the median of 100 across 169 observational studies indexed under Scleroderma, Systemic.
Browse Scleroderma, Systemic studies →Assistance Publique - Hôpitaux de Paris is the lead sponsor of 3,505 studies on the registry; 1,006 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Male or female aged 18 and older with a diagnosis of ScS made according to ACR and/or Leroy et Medsger criteria
Exclusion Criteria:
Validation of an ICF core Set for Systemic sclerosis
Submit the list of items to a cohort of 100 patients and experts.
Time frame: Between the 13th and 24th month
Translation of concepts identified such as items ICF (linking).
Translation of extracted data and set up the core set
Time frame: Between the 10th and 12th month
Creation of a database from a qualitative survey
This database will be elaborated considering information from a qualitative survey of 100 patients, a consultation with experts and a review of the literature
Time frame: During the first 9 months
Plan to share: No
This study is completed, as verified in Mar 2026. You cannot join it, but the record below documents what was studied.
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Assistance Publique - Hôpitaux de Paris