Cross-cultural Adaptation and Validation of the Localised Scleroderma Quality of Life Instrument (LoSQI) in Juvenile Localised Scleroderma (JLS)

Brief summary (registry, in English)

This international study adapts and validates the Localised Scleroderma Quality of Life Instrument (LoSQI) for children with JLS, a rare condition causing hardened skin and tissue. Goals \& Methods: Workstream 1: Translates and culturally adapts LoSQI for multi-national use, pre-testing it with patients and families. Workstream 2: Validates the tool through a prospective study of at least 100 patients across global centers (PRINTO, CARRA, PRES). Impact: It creates the first multi-national, disease-specific Patient-Reported Outcome (PRO) for JLS, helping researchers combine global data and embedding quality-of-life tracking into routine clinical care.

What you commit to

• Study type: Observational
• Participants enrolled: 272
• From 18 May 2022 to the primary completion date, 5 Feb 2026
• 33 sites in 19 countries
• Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Who the study is looking for

Age in the registry: 8 years to 18 years · Sex: All · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (33)

Sites in registry order. Pick your city on the disease page to sort them by distance.