Published On: October 20th, 20200 Comments

This is an international pediatric and adult database to monitor and report outcomes of COVID-19 occurring in hidradenitis suppurativa (HS) patients. We will use these data to better understand risk of infection and clinical course, track outcomes, and inform HS management in the setting of COVID-19.

Cases can be reported by healthcare professionals caring for HS patients OR HS patients who experienced COVID-19 illness or their caregivers. We encourage HS clinicians and HS patients worldwide to report ALL cases of COVID-19 in HS patients, regardless of severity—including asymptomatic patients detected through public health screenings.

The success of this global collaborative effort depends on active participation by providers who care for HS patients, and procurement of accurate and reliable information. Please share this site with your colleagues and friends and encourage them to report any cases of COVID-19 in HS patients. We will provide the HS community with regularly updated summary information about updated cases so the entire HS community has access to these data.

Please report suspected or confirmed COVID-19 cases after a minimum of 7 days after COVID-19 diagnosis and after sufficient time has passed to observe disease course through resolution of acute illness or death.

The case report form should take about 5-10 minutes to complete. The database contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards. The UCSF Institutional Review Board has determined that this study constitutes quality improvement/surveillance research, and not human subjects research. Therefore, under federal regulations, this study does not require IRB approval.

 

Link to Registry: https://hscovid.ucsf.edu