About the GHiSA

The Global Hidradenitis Suppurativa Atlas (GHiSA) Initiative

 

There is an urgent need for a robust and systematic approach to assess HS epidemiology globally. The Global Hidradenitis Suppurativa Atlas (GHiSA) project was initiated to address gaps in knowledge about HS epidemiology. GHiSA is an international non-profit organization launched to promote awareness and information in support of improved management of HS globally. The primary objective of GHiSA is to tackle the challenges associated with HS through global collaboration, research, and disease awareness.

 

GHiSA is governed by a president, secretary-general, honorary secretary, steering committee, and treasurer. The governance committee oversees national investigators, ensuring coordination at a national level. Moreover, GHiSA comprises separate sub-committees dedicated to advancing research methods, fundraising, marketing, and collaborative expansion.

 

The overall aim of the GHiSA Global Prevalence Study is to present reference data for global HS epidemiology, and thereby provide the first estimate of HS burden globally (Phase 1). To that end, systematic and prospective HS prevalence data are currently being collected from approximately 50 countries across 6 continents. Data resulting from the GHiSA Global Prevalence Study will be used to develop core criteria for future epidemiolocal studies (Phase 2). Ultimately, GHiSA aims to conduct additional global epidemiological studies on HS, aimed at investigating the complex interplay between phenotype, genetics, environment, and other risk factors. A phenotype study is planned and will be conducted globally in 2024 (Phase 3).

Phase 1 of GHiSA will focus on the development of the Global Hidradenitis Suppurativa Atlas with the following objectives:

 

  1. Completion of the GHiSA Global Prevalence Study across 50 countries.
  2. Invitation of an additional 50 countries to conduct the GHiSA Global Prevalence study.
  3. Development of the Global Hidradenitis Suppurativa Atlas (GHiSA), a web-based resource on HS globally. The findings from the GHiSA Global Prevalence Study will serve as the basis for creating the web-based atlas. GHiSA will initially compile and report the following data from each participating country: background population and society data, HS prevalence data, and HS patient associations.

 

Phase 2 of GHiSA will focus on development of core criteria for future epidemiolocal studies with the following objectives:

 

  1. The establishment of an HS expert reference group.
  2. Achieving consensus on essential criteria for the design and implementation of epidemiological studies on HS within the HS expert reference group on core criteria for the design and conduction of future epidemiological studies on HS.
  3. Proposal of innovative ideas for future epidemiological studies to advance understanding and management of HS worldwide.

Phase 3 of GHiSA will focus on executing additional epidemiological studies on HS with the following objectives:

 

  1. Collaboration with established partners to conduct novel epidemiological studies in all regions of the world.
  2. Investigating the phenotype of HS globally.
  3. Investigating the genotype of HS globally.
  4. Exploring the impact of environmental factors, lifestyle habits, and comorbidities on HS development and progression.