CaPCHR

Study title: Canadian Paediatric Chronic Pain Registry (CaPCHR)

Study description: Chronic pain affects 1 in 5 Canadian children and impairs all aspects of quality of life. However, there is currently no national registry to monitor standardized paediatric chronic pain outcomes and inform coordinated clinical care. Our team of clinicians, researchers and patient partners has been working toward the creation and implementation of a Canadian Paediatric Chronic Pain Registry (CaPCHR) for the past 10 years through the Chronic Pain Network.

We have earned buy-in from 12/12 existing pain clinics for this initiative. We have also established the outcomes for a minimal data set, informed by the validated Ped-IMMPACT recommendations, existing international registries, a Delphi-survey and previous consensus meeting. Usability testing has been completed to ensure that measures are easy to understand and minimally burdensome.

The CaPCHR minimal data set has been clinically collected at The Hospital for Sick Children (SickKids) since 2018 and generated over 1,500 records. The SickKids instance of CaPCHR also includes rudimentary data visualizations that are used to inform care. Since the SickKids launch, the minimal data set has been rolled out at four other sites. However, a central CaPCHR database at SickKids has not yet been established to integrate site data due to regulatory complexities and other challenges. We are continuously working towards creating a centralized database through addressing such challenges.