Hidradenitis suppurativa (HS) is a chronic, debilitating and scarring skin condition which typically starts in early adulthood and so we need very long-term real-world data on the safety and effectiveness of HS treatments. The data from the UK-Irish Hidradenitis Suppurativa Treatment Registry Study (H-STRONG) will go beyond the limited duration of randomised controlled trials and the study will be large enough to detect any rare side effects of treatments and any associated conditions. The registry will have control groups so the potential for new treatments to slow or prevent disease progression can be fully assessed.

The H-STRONG Registry Study was set up in 2024 as a long-term BAD project. It is a multicentre, observational clinical registry study following  adults and children (9 years and older) with HS over time. Data will be collected from hospital dermatology departments in the UK and subsequently Ireland. The registry aims to establish long term effectiveness and safety of biologic, novel small molecule and conventional therapy for HS and document disease progression over time.

H-STRONG is coordinated and funded by the BAD and sponsored by Cardiff University. It has a biorepository element, collecting optional blood samples from all recruiting sites, and will also collect tissue from a few sites, which will be stored in the Cardiff University Biobank. While the registry is receiving financial support from the pharmaceutical industry, it is run by an independent steering committee with no industry representation.

H-STRONG is being rolled out to dermatology departments across the UK and Ireland, after being established in several initial pilot sites. Health care providers enter data into a secure web-accessed database, which also has a patient portal for participants to directly enter their own data from questionnaires and other patient outcome measures.

The way data is collected and the type of data being collected means that H-STRONG will have the potential to link with HS registries in other parts of the world to answer research questions requiring very large numbers of participants. The outcome measures have been mapped to the Hidradenitis Suppurativa Core Outcomes Set International Collaboration (HiSTORIC)

H-STRONG welcomes enquiries from dermatology departments in the UK and Ireland who wish to join the study. Please contact: John Ingram: IngramJR@cardiff.ac.uk