Developing a minimum dataset for a national patient registry on Long COVID in Canada: a Delphi consensus-based study.

ABSTRACT:

Objectives

To develop survey items for a national patient registry on Long COVID using a modified Delphi process.

Design

This study was based on a modified Delphi process involving three rounds of anonymous, online surveys to develop consensus on and prioritise survey elements to be included in a minimum dataset for use in a national patient registry in Canada. Initial Long COVID items were identified through an environmental scan of the literature.

Setting

This study focused on healthcare systems in Canada and was conducted online.

Participants

A panel of 52 experts (patients, caregivers, clinicians and researchers) participated in all three rounds of the online survey. These participants were recruited through the Long COVID Web network and word of mouth.

SUBMITTER: Mazurik K 

PROVIDER: S-EPMC12682166 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature