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

January 27, 2026 updated by: PeriPharm
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.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Detailed 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.

Study Type

Observational

Enrollment (Actual)

88

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Canada
    • Quebec
      • Montreal, Quebec, Canada, H2Y 1V3
        • PROxy Network, an initiative of PeriPharm inc.

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Patients with Lupus who are part of Lupus Canada database

Description

Inclusion Criteria:

  1. 18 years of age or older;

  2. Part of the Lupus Canada database;

    a. Self-identified as a patient with Lupus.

  3. Ability to read and understand English or French;
  4. Signature of informed consent form.

Exclusion Criteria:

1. Participation in an interventional clinical trial for Lupus.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
Patients with lupus
Adult patients with lupus member of Lupus Canada database
Other: No Intervention: Observational Cohort
No specific intervention is assess in this study. Observational cohort.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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.
At recruitment

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Indirect Costs and Patients' Preference Questionnaire
Time Frame: At recruitment
Using a self-administered, 19-item questionnaires.
At recruitment
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.
At recruitment

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

PeriPharm

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

November 3, 2025

Primary Completion (Actual)

January 23, 2026

Study Completion (Actual)

January 23, 2026

Study Registration Dates

First Submitted

November 24, 2025

First Submitted That Met QC Criteria

November 24, 2025

First Posted (Actual)

December 5, 2025

Study Record Updates

Last Update Posted (Actual)

January 29, 2026

Last Update Submitted That Met QC Criteria

January 27, 2026

Last Verified

January 1, 2026

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • PROxy250918

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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