Global consensus process to establish a core dataset for hidradenitis suppurativa registries

Hannah E Wainman; Nisha S Chandran; John W Frew; Amit Garg; Angela Gibbons; Athena Gierbolini; Barbara Horvath; Gregor B Jemec; Brian Kirby; Joselyn Kirby; Michelle A Lowes; Antonio Martorell; Barry M McGrath; Haley B Naik; Hazel H Oon; Errol Prens; Christopher J Sayed; Linnea Thorlacius; Hessel H Van der Zee; Bente Villumsen; John R Ingram

doi:10.1093/bjd/ljad454

Global consensus process to establish a core dataset for hidradenitis suppurativa registries

Br J Dermatol. 2024 Mar 15;190(4):510-518. doi: 10.1093/bjd/ljad454.

Authors

Hannah E Wainman^{1

2}, Nisha S Chandran^{3

4}, John W Frew^{5

6}, Amit Garg⁷, Angela Gibbons⁸, Athena Gierbolini⁹, Barbara Horvath¹⁰, Gregor B Jemec¹¹, Brian Kirby^{12

13}, Joselyn Kirby¹⁴, Michelle A Lowes¹⁵, Antonio Martorell¹⁶, Barry M McGrath¹⁷, Haley B Naik¹⁸, Hazel H Oon¹⁹, Errol Prens²⁰, Christopher J Sayed²¹, Linnea Thorlacius¹¹, Hessel H Van der Zee²⁰, Bente Villumsen²², John R Ingram²³

Affiliations

¹ Department of Dermatology, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.
² Bristol Medical School, University of Bristol, Bristol, UK.
³ Division of Dermatology, Department of Medicine, National University Hospital, Singapore.
⁴ Department of Medicine, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
⁵ Department of Dermatology, Liverpool Hospital, Sydney, NSW, Australia.
⁶ University of New South Wales, Sydney, NSW, Australia.
⁷ Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra Northwell, New Hyde Park, NY, USA.
⁸ Patient Representative, The HS Support Network UK and Ireland, UK.
⁹ Patient Representative, Mt. Joy, PA, USA.
¹⁰ Department of Dermatology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
¹¹ Department of Dermatology, Zealand University Hospital, Roskilde, Denmark.
¹² Charles Department of Dermatology, St. Vincent's University Hospital, Dublin, Ireland.
¹³ Charles Institute of Dermatology, University College Dublin, Dublin, Ireland.
¹⁴ Department of Dermatology, Penn State Health Milton S. Hershey Medical Center, Hershey, PA, USA.
¹⁵ The Rockefeller University, New York, NY, USA.
¹⁶ Department of Dermatology, Hospital of Manises, Valencia, Spain.
¹⁷ Patient Representative, HS Ireland, County Clare, Ireland.
¹⁸ Department of Dermatology, University of California San Francisco, San Francisco, CA, USA.
¹⁹ Department of Dermatology, National Skin Centre, Singapore, Singapore.
²⁰ Department of Dermatology, Erasmus University Medical Center, Rotterdam, the Netherlands.
²¹ Department of Dermatology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
²² Patient Representative, The Patients' Association HS Denmark, Denmark.
²³ Department of Dermatology & Academic Wound Healing, Division of Infection and Immunity, Cardiff University, Cardiff, UK.

PMID: 37976235
DOI: 10.1093/bjd/ljad454

Abstract

Background: Several registries for hidradenitis suppurativa (HS) already exist in Europe and the USA. There is currently no global consensus on a core dataset (CDS) for these registries. Creating a global HS registry is challenging, owing to logistical and regulatory constraints, which could limit opportunities for global collaboration as a result of differences in the dataset collected. The solution is to encourage all HS registries to collect the same CDS of information, allowing registries to collaborate.

Objectives: To establish a core set of items to be collected by all HS registries globally. The core set will cover demographic details, comorbidities, clinical examination findings, patient-reported outcome measures and treatments.

Methods: Beginning in September 2022, 20 participants - including both clinicians with expertise in HS and patient advocates - from eight countries across three continents participated in a Delphi process consisting of four rounds of voting, with all participants completing each round. A list of potential items for inclusion in the core set was generated from the relevant published literature, including systematic reviews of comorbidities in HS, clinical and examination findings, and epidemiology. For disease severity and progression items, the Hidradenitis SuppuraTiva Core outcome set International Collaboration (HiSTORIC) core set and other relevant instruments were considered for inclusion. This resulted in 47 initial items. Participants were invited to suggest additional items to include during the first round. Anonymous feedback was provided to inform each subsequent round of voting to encourage consensus.

Results: The eDelphi process established a CDS of 48 items recommended for inclusion in all HS registries globally.

Conclusions: The routine adoption of this CDS in current and future HS registries should allow registries in different parts of the world to collaborate, enabling research requiring large numbers of participants.

MeSH terms

Consensus
Delphi Technique
Hidradenitis Suppurativa* / diagnosis
Hidradenitis Suppurativa* / epidemiology
Hidradenitis Suppurativa* / therapy
Humans
Registries
Treatment Outcome