H-STRONG Registry Study. v2.5
Research type
Research Study
Full title
UK-Irish Hidradenitis Suppurativa Treatment Registry Study (H-STRONG)
IRAS ID
340049
Contact name
John R Ingram
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
15 years, 0 months, 1 days
Research summary
The H-STRONG registry study will collect data on the long term benefit and safety of treatments for hidradenitis suppurativa (HS). This chronic skin condition affects about one in 100 of the UK population and causes very painful boils in skin crease sites such as the arm pit and groin, which produce pus and can lead to permanent skin scars. The study will also collect information on how quickly the condition worsens from mild to severe in some people and what factors may predict this. The registry will not change participants' treatment, this will continue to be decided by their local clinician.
The registry will include all people aged at least nine years old with HS who wish to participate, recruiting from dermatology and surgery departments in the UK and Ireland. Data will be entered and stored in a secure, web-based database. Participants will be asked to enter patient reported outcomes into the database themselves via a link. The registry is expected to follow people for at least 15 years, because HS is a long term condition.
Participants will be asked if they wish to provide a blood sample to help investigate the causes of HS. The samples will be stored in a biobank run by Cardiff University. A few centres will ask participants if they wish to donate small skin samples, collected under local anaesthetic when they are already having skin surgery for HS or at a different time. The skin samples will also be stored in the Cardiff Biobank.
REC name
Wales REC 4
REC reference
24/WA/0198
Date of REC Opinion
12 Jul 2024
REC opinion
Favourable Opinion