patient partners

HS Workgroup at the 2019 IDEOM Annual Meeting

Workgroup Chair: Alice Gottlieb, MD, PhD

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is a skin condition that causes small, painful lumps to form under the skin. The lumps can break open, or tunnels can form under the skin. The condition mostly affects areas where the skin rubs together, such as the armpits, groin, buttocks and breasts.Hidradenitis suppurativa tends to start after puberty. It can persist for many years and worsen over time, with serious effects on your daily life and emotional well-being. Medications and surgery can help manage symptoms and prevent complications.

Source: Mayo Clinic

HS Workgroup Subcommittees

The HS Workgroup is made up of Stakeholder Subcommittees. These subcommittees include:

  • Best Practices for In-person and Telederm Visits for HS Patients
  • Assessment and Prevention of Scarring in HS (Co-Chairs: Antonio Martorell and Sandra Guilbault)
  • Assessing Musculoskeletal Symptoms in HS
  • Patient Self-Care in HS
  • Pediatric HS (Chair: Wayne Gulliver)

If you are interested in participating in one or more of the subcommittees please complete the following subcommittee sign up form:

If you are not yet an IDEOM Stakeholder please complete THE STAKEHOLDER APPLICATION.


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

12. Alison H. Kohna, Afsaneh Alavi, April W. Armstrong, Folawiyo Babalola, Amit Garg, Alice B. Gottlieb, Lesley Grilli, Gregor B. E. Jemec, John Latella, Kendall Marcus, Joseph F. Merola, Alex G. Ortega-Loayza, Daniel M. Siegel, Vibeke Strand, Jerry K. L. Tan, Lourdes M. Perez-Chada.Review Article International Dermatology Outcome Measures (IDEOM) – Report from the 2020 Annual Meeting. Read...


HS Workgroup at the 2019 IDEOM Annual Meeting