Our research improves clinical care and quality of life for people with the inflammatory skin condition Hidradenitis Suppurativa (HS).

HS is a very painful inflammatory skin disease associated with abscesses and boils affecting skin creases (including the armpits, breasts and groin).

Despite the detrimental impact of these skin lesions on patient health and wellbeing, there has been little research on the disease. Our School of Medicine research team, led by Dr John Ingram, looked to change that.

Re-framing research priorities and standardising outcome measures

In 2013, Dr Ingram chaired a HS Priority Setting Partnership with the aim of establishing a new research agenda focused on identifying effective HS treatments. The group was a collaboration between the HS Trust patient support group and dermatologists with significant HS experience.

Key knowledge gaps in HS research were identified, including benefits associated with biological drug therapies and surgical intervention.

A second systematic review was undertaken by the Cardiff University team. This identified considerable differences in the methods being used to assess HS clinically, with variation in outcome measures (with effectively 30 different measures identified across 12 randomised trials in the review).

Due to the large variation in outcome measures the research team were unable to carry out a clear comparison between clinical trials. This limits evidence-based decisions on the best treatment that would improve patient care.

Dr Ingram therefore co-founded the HS Core Outcomes Set International Collaboration (HISTORIC). HISTORIC involves patients and healthcare professionals from 19 countries across 4 continents.

The group sought to overcome the discrepancy of outcome measures identified by the earlier research, focusing on identifying new outcome measures which could form the basis of future research programmes and HS trials.

Consensus decision-making identified six core outcome domains to measure in all future HS clinical trials: pain, physical signs, HS specific quality of life, global assessment, disease progression and symptoms.