Global consensus process to establish a core data set 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 VillumsenJohn R Ingram

*Corresponding author af dette arbejde

Publikation: Bidrag til tidsskriftArtikelForskningpeer review

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.

OriginalsprogEngelsk
Sider (fra-til)510-518
Antal sider9
TidsskriftThe British journal of dermatology
Vol/bind190
Udgave nummer4
Tidlig onlinedato17 nov. 2023
DOI
StatusUdgivet - 15 mar. 2024

Bibliografisk note

© The Author(s) 2023. Published by Oxford University Press on behalf of British Association of Dermatologists. All rights reserved. For permissions, please e-mail: [email protected].

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