UCSF & Partners Lead New COVID-19 Hidradenitis Suppurativa Patient Registry

UCSF & Partners Lead New COVID-19 Hidradenitis Suppurativa Patient Registry

University of California, San Francisco (UCSF) has launched an international pediatric and adult patient registry to monitor and report outcomes of COVID-19 occurring in hidradenitis suppurativa (HS) patients. This database will be leveraged for researchers to better understand risk of infection and clinical course, as well as track outcomes and inform HS management in the setting of COVID-19.

Report on Cases

UCSF encourages 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.

Requires Active Provider Participation

The success of this global collaborative effort requires an active participation by providers who care for HS patients, and procurement of accurate and reliable information. UCSF hopes providers will share the registry site with friends and encourage them to report any cases of COVID-19 in HS patients. UCSF will offer the HS community regular summary information about updated cases so the entire HS community has access to these data.

Reporting Recommendations

UCSF suggests cases are reported if suspected or confirmed COVID-19 cases aster 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 should only take about 5-10 minutes to complete. 

Database with De-Identified data

The data in the data base is de-identified and managed 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 doesn’t require IRB approval.

Collaborators

·         Hidradenitis Suppurativa Foundation, Inc.

·         Canadian Hidradenitis Suppurativa Foundation 

·         APHIS 

·         Hope for HS

Registry Steering Committee

The Steering Committee includes:

Haley Naik, MD, MHSc (PI) 

Raed Alhuasayen, MBBS MSCE, Sunnybrook Research Institute

John Frew, MBBS, MMed MSc 

Sandra Guilbault 

John R. Ingram, MD, PhD 

Michelle Lowes, MBBS PhD

Christine A. Yannuzzi, BA

Call to Action: Interested in learning more? Contact the organization at: [email protected]