Real-World Study on the Burden of Hidradenitis Suppurativa
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: No Intervention: Observational Cohort.
- Who it may be relevant to
- Registry conditions: Hidradenitis Suppurativa (HS). Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Center list to be confirmed — check the primary protocol.
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
Despite the significant impact of HS on patients' quality of life (QoL) and daily functioning, there remains limited real-world evidence describing the burden of this condition in Canada. HS is an under-recognized and often misdiagnosed condition, with a substantial psychological and physical burden on patients. Understanding the real-world experiences of individuals living with HS in Canada can help identify unmet needs and inform patient-centered care approaches.
Interventions
- Other No Intervention: Observational Cohort
No specific intervention is assess in this study. Observational cohort.
Primary outcome measures
- To estimate work productivity loss in patients with HS. [Time frame: At recruitment]
Secondary outcome measures (2)
- To estimate the QoL of patients with HS [Time frame: At recruitment]
- To estimate pain intensity in patients with HS. [Time frame: At recruitment]
Eligibility criteria
Inclusion criteria
- Patient diagnosed with HS;
- Aged ≥18 years;
- Able to read and understand French or English;
- Willing and able to provide written informed consent.
Exclusion criteria
1\. Participation in an interventional study for HS.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
Center list to be confirmed — check the primary protocol.
Identifiers
NCT: NCT07323303 · PROxy85HS