Hidradenitis suppurativa (HS)
Outcome measures in HS are markedly heterogeneous with 30 instruments found in 12 randomized trials
Scope of the intended COS
- Study types: all clinical trials
- Region: global
Systematic review, patient interviews and an online survey of HS clinicians generated potential items for inclusion in the core domain set. This was followed by an e-Delphi process and four in-person consensus meetings between patients and clinicians to create the core domains.
Involvement of stakeholders
41 patients with HS and 52 clinicians participated in the consensus process
Six core domains have been defined: pain, physical signs, HS-specific quality of life, global assessment, disease progression, and symptoms. Parallel work groups are now considering instruments to measure each domain.
International Dermatology Outcome Measures (IDEOM) initiative kindly provide financial support
19 countries in four continents
Date of updates
- Dr John Ingram
Project team members
- Linnea Thorlacius
- Bente Villumsen
- Joslyn Kirby
- Robin Christensen
- Amit Garg
- Gregor Jemec
Responsible member of Methods group (as assigned by CS-COUSIN)
- Prof Kim Thomas
- Dr John Ingram (firstname.lastname@example.org )
1. Thorlacius L, Garg A, Ingram JR, Villumsen B, Riis PT, Gottlieb AB, Merola JF, Dellavalle R, Ardon C, Baba R, Bechara FG, Cohen AD, Daham N, Davis M, Emtestam L, Fernandez-Penas P, Filippelli M, Gibbons A, Grant T, Guilbault S, Gulliver S, Harris C, Harvent C, Houston K, Kirby JS, Matusiak L, Mehdizadeh A, Mojica T, Okun M, Orgill D, Pallack L, Parks-Miller A, Prens EP, Randell S, Rogers C, Rosen CF, Choon SE, van der Zee HH, Christensen R, Jemec GBE. Towards global consensus on core outcomes for hidradenitis suppurativa research: an update from the HISTORIC consensus meetings I and II. Brit J Dermatol. 2018;178(3):715-721.
2. Thorlacius L, Ingram JR, Garg A, Villumsen B, Esmann S, Kirby JS, Gottlieb AB, Merola JF, Dellavalle R, Christensen R, Jemec GBE. Protocol for the development of a core domain set for hidradenitis suppurativa trial outcomes. Bmj Open. 2017;7(2).
3. Thorlacius L, Ingram JR, Villumsen B, Esmann S, Kirby JS, Gottlieb AB, Merola JF, Dellavalle R, Nielsen SM, Christensen R, Garg A, Jemec GBE, cORe HST. A core domain set for hidradenitis suppurativa trial outcomes: an international Delphi process. Brit J Dermatol. 2018;179(3):642-650.