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HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC)

Condition

Hidradenitis suppurativa (HS)

Background

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

Methods

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

Current status

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.

Funding

International Dermatology Outcome Measures (IDEOM) initiative kindly provide financial support

Involved Countries

19 countries in four continents

Date of updates

29/09/2019

Lead

  • 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

Contact

  • Dr John Ingram (ingramjr@cardiff.ac.uk )

Published references

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.