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OpenTrials
Completed

NCT Number: NCT07267091

The Burden of Lupus in Canada From a Patient Perspective: A Canadian Real-World PROxy Study

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.

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Key information

Conditions

Lupus Autoimmune Diseases Connective Tissue Diseases Immune System Diseases Lupus Arthritis Lupus Arthritis, Systemic Lupus Erythematosus Lupus Erythematosus, Systemic Quality of Life (QOL) Skin and Connective Tissue Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

PROxy Network, an initiative of PeriPharm Inc.

Montreal, Quebec, H2Y 1V3, Canada

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

  • Participation in an interventional clinical trial for Lupus.

Treatment and study plan

No Intervention: Observational Cohort

Other

No specific intervention is assess in this study. Observational cohort.

Primary outcomes

  1. To estimate quality of life of patients with lupus

    Time frame: At recruitment

    Using the 36-item Short Form (SF-36) questionnaire, a generic health-related quality of life questionnaire containing 8 domains. Each domains score ranges from 0 to 100, where 0 represents poor health and 100 best possible health.

Secondary outcomes

  1. To estimate work productivity impairment of patients with lupus.

    Time frame: At recruitment

    Using the Work Productivity and Activity Impairment (WPAI) questionnaire.

    This questionnaire provides a quantitative measure of impairment over the last 7 days and includes four metrics: absenteeism (work time missed because of health issues during the past 7 days), presenteeism (impairment while working due to health issues during the past 7 days), overall work productivity loss (combination of absenteeism and presenteeism), and activity impairment.

  2. Indirect Costs and Patients' Preference Questionnaire

    Time frame: At recruitment

    Using a self-administered, 19-item questionnaires.

Sponsors and collaborators

Lead sponsor

PeriPharm

Other

Registry information

Important dates

Study start
2025
Primary completion
2026
Study completion
2026
First posted
Dec 5, 2025
Registry last updated
Jan 29, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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