HIDRADENTITIS SUPPURATIVA WORKGROUP

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HS Workgroup at the 2019 IDEOM Annual Meeting



HISTORIC (the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration), a scientific collaboration among IDEOM, the Cochrane Skin Group, and Zealand University Hospital, has made significant progress towards its goal of developing a core outcome set (COS) suitable for interventional trials in Hidradenitis Suppurativa. Over 100 participants comprise our stakeholder group, within which patients and experts have roughly equal representation. Our stakeholder come from 19 different countries spread over 4 continents, making our collaborative truly multinational.

Our COS development process began with a review of the literature as well as a nominal process which yielded approximately 60 items deemed relevant for measurement in trials by stakeholders. Since then, and through five rounds of e-Delphi and three international in-person meetings in Vienna, New York City, and Copenhagen, we have with consensus arrived at our core set of candidate domains which have been described in a British Journal of Dermatology publication.

HISTORIC has made significant progress towards either selecting or developing measures matched to core domains. The Hidradenitis Suppurativa Quality of Life (HiSQOL) index is the first developed and validated disease specific quality of life measure for hidradenitis suppurativa which is also now in the FDA's qualification program. Other measures in development include global assessments, physical assessment, pain assessment, and assessments for other symptoms flare, recurrence.

publications

1. 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):e014733. Read...

2. Thorlacius L, Ingram JR, Villumsen B, Esmann S, Kirby JS, Gottlieb AB, Merola JF, Dellavalle R, Nielsen SM, Christensen R, Garg A and Jemec GBE, on behalf of the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC). A Core Domain Set For Hidradenitis Suppurativa Trial Outcomes: An International Delphi Process. Br J Dermatol. 2018 Apr 14. doi: 10.1111/bjd.16672 Read...

3. Thorlacius L, Garg A, Ingram JR, Villumsen B, Theut Riis P, 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 E, Randel 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. Br J Dermatol. 2018;178(3):715-721. Read...

4. Goldfarb N, Lowes MA, Butt M, King T, Alavi A, Kirby JS (2020). Hidradenitis Suppurativa Area and Severity Index Revised (HASI-R): psychometric property assessment. Br J Dermatol.

5. Goldfarb N, Ingram JR, Jemec GBE, Naik HB, Piguet V, Hyde MJ, Freese R, Lowes MA, Alavi A (2020). Hidradenitis Suppurativa Area and Severity Index (HASI): a pilot study to develop a novel instrument to measure the physical signs of hidradenitis suppurativa. Br J Dermatol 182(1):240

6. Kirby JS, Butt M, King T (2020). Severity and Area Score for Hidradenitis (SASH): a novel outcome measurement for hidradenitis suppurativa. Br J Dermatol. 182(4):940

7. Kirby JS, Thorlacius L, Villumsen B, Ingram JR, Garg A, Christensen KB, Butt M, Esmann S, Tan J, Jemec GBE. The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials. Br J Dermatol. 2020 Aug;183(2):340-348.

8. Kirby JS, Hereford B, Thorlacius L, Villumsen B, Ingram JR, Garg A, Butt M, Esmann S, King T, Tan J, Jemec GBE. Validation of global item for assessing impact on quality of life of patients with hidradenitis suppurativa. Br J Dermatol. 2020 Jun 29. doi: 10.1111/bjd.19344.

9. Sarfo A, Butt M, Kirby JS. Br J Dermatol. 2020;182(1):218.

10. Kirby JS, Moore B, Leiphart P, Shumaker C, et al. Br J Dermatol. 2020;182(1):24.

11. HS; BMJ Open 2017;7(2):e014733; Br J Dermatol. 2018;178(3):715-721; Br J Dermatol. 2018;179(3):642-650


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HS Workgroup at the 2019 IDEOM Annual Meeting