Frequently Asked Questions

Who can report a case? Healthcare providers taking care of patients with HS and documented COVID-19 may report a case using the Provider Survey. HS patients who have experienced COVID-19 illness, or their caregivers may also report a case using the Patient Survey

Can healthcare providers or HS patients anywhere in the world report a case?  Yes. This is an international effort, and we encourage health care providers and HS patients around the world to report to this registry.

How long does it take to complete the survey? It takes 5-7 minutes to complete the provider survey, and about 10-15 minutes to complete the patient survey.

Once a survey has been submitted, can it be re-accessed or updated at a later time? Once a survey is submitted, it cannot be re-accessed. If you have updated information after you report a case, please re-report the case in the registry with the updated information and email [email protected] to request deletion of the original record.

Is individual patient consent required for providers to enter data into the registry? No. The UCSF Institutional Review Board has determined that this study constitutes quality improvement/surveillance research, and is not human subjects research. The database contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards. Therefore, under federal regulations, this study does not require IRB approval and consent is not required for de-identified data collection.

Do I need to get approval from my local IRB in the USA? U.S. entities generally recognize our existing IRB determination, and you should not need additional approvals. However, some academic institutions may have special requirements.

Do I need to get approval from my IRB outside the USA? IRB procedures around the world vary. Please contact your local IRB to determine if IRB approval is required at your institution.

I am in private practice. Do I need to request separate IRB approval to report cases? There is no need for seeking additional IRB approval or determinations. The UCSF IRB should cover those in private practice.

Who are the organizers of this project? The registry is coordinated by an international steering committee comprising HS clinicians, researchers and patients. Partnering organizations include the Hidradenitis Suppurativa Foundation, the Canadian Hidradenitis Suppurativa Foundation, the European Hidradenitis Suppurativa Foundation, the Asia-Pacific Hidradenitis Suppurativa Foundation, Hope for HS and Hidradenitis Suppurativa Warriors. The Principal Investigator of the registry is Haley Naik, MD, MHSc ([email protected]) at the University of California San Francisco.

Whom can I contact with questions? Please contact [email protected] with any questions.