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This study aims to capture the Canadian patient experience, burden, barriers, and treatment preferences. The findings will generate real-world evidence to support patient-centered care and guide healthcare providers, researchers, and decision-makers in improving support and treatment for people living with lupus.
Full description
Lupus Canada will distribute an invitation to participate in the study through their mailing list, website, social networks providing a link to the questionnaire. Their mailing list database comprises about 8,000 individuals, including patients. Lupus Canada will reach out to the lupus community to inform them about their eligibility to participate in the study. Those meeting the eligibility criteria will be invited to sign the informed consent form (ICF) and complete all the study questionnaires on the PROxy web-based platform. For any questions, interested participants will have access to the contact information of the PROxy team, and a designated team member will communicate with participants by phone to answer all questions.
Enrollment
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Inclusion criteria
18 years of age or older;
Part of the Lupus Canada database;
a. Self-identified as a patient with Lupus.
Ability to read and understand English or French;
Signature of informed consent form.
Exclusion criteria
1. Participation in an interventional clinical trial for Lupus.
88 participants in 1 patient group
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Data sourced from clinicaltrials.gov
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