Observational study of medical and surgical treatments

for hidradenitis suppurativa

Background and study aims
Hidradenitis suppurativa (HS) is a long term, painful skin condition. It involves boils in areas such as the armpit and groin. It affects young adults of working age. HS has a big effect on quality of life due to pain, scarring and release of pus. It also affects sex and relationships. This study will provide vital information to answer questions that were identified as priority areas for research by patients with HS and the doctors and nurses who treat them. The aim is to inform the design of future HS trials and to understand how HS treatments are currently used. This involves five steps:
1. Describe the treatments used around the country (particularly the type of operation, which can vary from centre to centre)
2. See whether patients might consider joining a research study in the future and which treatment(s) they would prefer
3. Define how patients with HS are currently seen within the health service. Learn what influences patients’ and clinicians’ treatment choices
4. Select the best ways of measuring response to treatment (outcome measures)
5. Ask patients and doctors to agree the best design for future HS studies

Who can participate?
Patients aged 18 and over with active HS of any severity that is not adequately controlled by current treatment

What does the study involve?
Patients with HS are invited to join the study as volunteers. By inviting people who are treated by skin doctors and those treated by surgeons, the researchers should receive information about a range of treatments. The volunteers pick from the range of treatments available locally and, for the year after, the researchers record what happens to them. They measure how well the treatment has worked using recommended questionnaires and help to interpret the questionnaire results by checking what changes in score matter to patients and whether the questionnaires are suitable for normal clinical practice. During the study the surgical and laser operations are video recorded to make a training video for future studies.

What are the possible benefits and risks of participating?
Deroofing and laser hair removal, when offered by a recruiting centre, are not usually available for HS in the UK (they are available in several other countries). Participants will also be contributing to standardising outcome measures for future HS trials. Techniques used for surgical procedures are part of standard surgical skills, but all participating surgeons will complete a specialised training package before performing deroofing. Participation in the study will require completion of some additional questionnaires not currently used in routine HS care that will take up additional time during clinic appointments.

Where is the study run from?
1. University Hospital of Wales
2. Hull York Medical School
3. Royal Free Hospital
4. Newcastle Upon Tyne Hospital
5. Broomfield Hospital
6. Guy's & St Thomas Hospitals
7. Barnsley Hospital
8. Stirling Community Hospital
9. Salisbury Hospital
10. Nuffield Orthopaedic Centre

When is the study starting and how long is it expected to run for?
April 2019 to March 2022

Who is funding the study?
Health Technology Assessment Programme (UK)

Who is the main contact?
1. Janine Bates
2. Dr John Ingram



© 2021 by HS Connect, LLC  |  HSConnect.org@gmail.com  |  PO Box 73244 Puyallup, WA 98373  |  253.256.1579