Researchers aim to create a universal checklist for scleroderma
NCT ID NCT01848418
First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study aimed to create a standard set of items, called an ICF core set, to describe the health and functioning of people with systemic sclerosis (scleroderma). Researchers gathered input from 100 patients and experts to identify the most important aspects of the disease. The goal is to improve communication and assessment in both clinical care and research.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If successful, this could provide a standardized tool to better assess and communicate the impact of systemic sclerosis on patients' lives.
- What could go wrong
- This is an observational, knowledge-gathering study, not a treatment trial. The core set may not be adopted widely or may need further validation.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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113 people
The number who actually took part.
- Started
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Oct 2012
- Finished
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Mar 2018
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Male or female aged 18 and older with a diagnosis of ScS made according to ACR and/or Leroy et Medsger criteria
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
-
Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
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Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Male or female aged 18 and older * Diagnosis of ScS made according to ACR and/or Leroy et Medsger criteria * Patient giving his informed consent to participate in the study Exclusion Criteria: * Severe chronic disease associated with ScS : stroke, multiple sclerosis, Parkinson's disease,… * Cognitive or behavioral disorders making assessment impossible * Inability to speak and write French
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Cochin Hospital
Paris, 75014, France
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Other studies related to the condition(s) this trial covers.
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