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Cross-cultural Adaptation and Validation of the Localised Scleroderma Quality of Life Instrument (LoSQI) in Juvenile Localised Scleroderma (JLS)
Sponsor: Istituto Giannina Gaslini
Summary
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.
Official title: Cross-cultural Adaptation and Validation of the Localised Scleroderma Quality of Life Instrument (LoSQI) in Juvenile Localised Scleroderma (JLS): a Multicentre Study of the PRES Scleroderma Working Party in Collaboration With Members of the CARRA Scleroderma Working Group
Key Details
Gender
All
Age Range
8 Years - 18 Years
Study Type
OBSERVATIONAL
Enrollment
272
Start Date
2022-05-18
Completion Date
2026-12
Last Updated
2026-10-30
Healthy Volunteers
No
Conditions
Locations (33)
Hospital Pedro de Elizalde
Buenos Aires, Argentina
Hospital das Clínicas - Botucatu Medicine University, UNESP
Botucatu, Brazil
Faculdade de Ciencias Medicas da UNICAMP
Campinas, Brazil
University Hospital Pedro Ernesto
Rio de Janeiro, Brazil
Universidade Federal de São Paulo
São Paulo, Brazil
Children's hospital of Zhejiang University School of Medicine
Hangzhou, China
University Hospital Centre Zagreb, University School of Medicine
Zagreb, Croatia
Aarhus University Hospital
Aarhus, Denmark
Ain Shams University
Cairo, Egypt
Hamburg Centre for Pediatric and Adolescent Rheumatology
Hamburg, Germany
University of Athens Medical School, Children Hospital Aghia Sophia
Athens, Greece
SRCC Childrens Hospital
Mumbai, India
Azienda Ospedaliero Universitaria Meyer
Florence, Italy
Fondazione IRCCS Ca' Granda-Ospedale Maggiore Policlinico
Milan, Italy
Ospedale Pediatrico Bambino Gesu'
Roma, Italy
Presidio Ospedaliero Universitario "Santa Maria della Misericordia"
Udine, Italy
University Children Hospital
Riga, Latvia
Emma Children Hospital, Academic Medical Center (AMC)
Amsterdam, Netherlands
Amalia Children's Hospital, Radboud University Medical Center
Nijmegen, Netherlands
Oslo University Hospital and University of Oslo
Oslo, Norway
University Hospital of Northern Norway
Tromsø, Norway
St. Olavs University Hospital of Trondheim
Trondheim, Norway
Institute of Rheumatology
Warsaw, Poland
Translational Immunology Institute
Singapore, Singapore
National Institute of Children's Diseases
Bratislava, Slovakia
Hospital Sant Joan de Déu
Esplugues de Llobregat, Spain
Health Sciences University, Umraniye Education and Research Hospital
Istanbul, Turkey (Türkiye)
Istanbul University Faculty of Medicine
Istanbul, Turkey (Türkiye)
Istanbul University, Cerrahpasa Medical Faculty
Istanbul, Turkey (Türkiye)
Alder Hey Children's NHS Foundation Trust
Liverpool, United Kingdom
Royal Manchester Children's Hospital
Manchester, United Kingdom
Newcastle Hospitals NHS Foundation Trust
Newcastle upon Tyne, United Kingdom
Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust
Nottingham, United Kingdom