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The Hidradenitis Suppurativa Priority Setting Partnership.

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Patients and clinicians identified top research priorities for hidradenitis suppurativa (HS), a neglected chronic skin disease. Key areas include effective treatments, acute flare management, and understanding HS impact on patients.

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Area of Science:

  • Dermatology
  • Public Health
  • Patient Advocacy

Background:

  • Hidradenitis suppurativa (HS) is a prevalent, painful, chronic skin condition often overlooked in research and public awareness.
  • Despite its impact, HS research funding and societal attention remain insufficient.

Purpose of the Study:

  • To establish a consensus-driven top 10 list of research priorities for hidradenitis suppurativa (HS).
  • Priorities were determined from the perspectives of patients, caregivers, and clinicians to guide funding bodies.

Main Methods:

  • A priority setting partnership utilized the James Lind Alliance process.
  • Two surveys collected HS uncertainties, followed by a nominal group technique workshop to finalize the top 10 priorities.
  • Stakeholder engagement included patients, caregivers, and clinicians throughout the process.

Main Results:

  • 1495 uncertainties were submitted, refined into 55 indicative uncertainties, and prioritized by 371 participants.
  • The top three HS research priorities identified were: most effective/safe oral treatments, best acute flare management, and impact of HS on individuals.
  • The final list comprises 10 critical research areas for HS.

Conclusions:

  • The identified top 10 HS research priorities have been communicated to funding agencies to increase awareness.
  • Future research will focus on generating evidence to enhance patient care for hidradenitis suppurativa.