{"id":3097,"date":"2025-03-28T18:22:20","date_gmt":"2025-03-28T18:22:20","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/iouch\/?page_id=3097"},"modified":"2025-05-29T16:45:35","modified_gmt":"2025-05-29T16:45:35","slug":"capchr-registry","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/iouch\/research-studies\/capchr-registry\/","title":{"rendered":"CaPCHR"},"content":{"rendered":"<p><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-background-position:left top;--awb-background-blend-mode:overlay;--awb-border-sizes-top:0px;--awb-border-sizes-bottom:0px;--awb-border-sizes-left:0px;--awb-border-sizes-right:0px;--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-padding-top-medium:100px;--awb-padding-bottom-medium:100px;--awb-padding-top-small:50px;--awb-padding-bottom-small:50px;--awb-margin-bottom:0px;--awb-background-color:var(--awb-custom_color_11);--awb-background-image:linear-gradient(180deg, rgba(0,0,0,0.03) 14%,rgba(0,0,0,0) 100%);--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-center fusion-flex-content-wrap\" style=\"max-width:calc( 1170px + 0px );margin-left: calc(-0px \/ 2 );margin-right: calc(-0px \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_2_3 2_3 fusion-flex-column fusion-flex-align-self-center fusion-column-no-min-height\" style=\"--awb-bg-blend:overlay;--awb-bg-size:cover;--awb-width-large:66.666666666667%;--awb-margin-top-large:0px;--awb-spacing-right-large:calc( 0.04 * calc( 100% - 0px ) );--awb-margin-bottom-large:20px;--awb-spacing-left-large:0px;--awb-width-medium:66.666666666667%;--awb-spacing-right-medium:calc( 0.04 * calc( 100% - 0px ) );--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-margin-bottom-small:0px;--awb-spacing-left-small:0px;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-text fusion-title-size-one\" style=\"--awb-text-color:var(--awb-color1);--awb-margin-top:30px;\"><h1 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"margin:0;--fontSize:72;line-height:var(--awb-typography1-line-height);\">CaPCHR<\/h1><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 fusion_builder_column_1_3 1_3 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:33.333333333333%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:20px;--awb-spacing-left-large:0px;--awb-width-medium:33.333333333333%;--awb-order-medium:0;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element \" style=\"text-align:center;--awb-mask-url: url(https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/plugins\/fusion-builder\/\/assets\/images\/masks\/mask-1.svg);--awb-max-width:200px;--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><span class=\" fusion-imageframe imageframe-none imageframe-1 hover-type-none has-mask\"><img decoding=\"async\" width=\"751\" height=\"751\" alt=\"Canadian Paediatric Chronic Pain Registry logo\" src=\"https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/02\/CaPCHR-1-e1740426967400.png\" data-orig-src=\"https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/02\/CaPCHR-1-e1740426967400.png\" class=\"lazyload img-responsive wp-image-2578\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27751%27%20height%3D%27751%27%20viewBox%3D%270%200%20751%20751%27%3E%3Crect%20width%3D%27751%27%20height%3D%27751%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/02\/CaPCHR-1-e1740426967400-200x200.png 200w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/02\/CaPCHR-1-e1740426967400-400x400.png 400w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/02\/CaPCHR-1-e1740426967400-600x600.png 600w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/02\/CaPCHR-1-e1740426967400.png 751w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 1004px) 100vw, (max-width: 408px) 100vw, 400px\" \/><\/span><\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-2 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-padding-top:50px;--awb-padding-bottom:50px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-center fusion-flex-content-wrap\" style=\"max-width:1216.8px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:1;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><strong>Study title: <\/strong>Canadian Paediatric Chronic Pain Registry (CaPCHR)<\/p>\n<p><strong>Study description: <\/strong>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 <em>Canadian <\/em><em>Paediatric<\/em><em> Chronic Pain Registry (CaPCHR)<\/em> for the past 10 years through the Chronic Pain Network.<\/p>\n<p>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.<\/p>\n<p>The <em>CaPCHR<\/em> 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 <em>CaPCHR<\/em> 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 <em>CaPCHR<\/em> 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.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-3 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1216.8px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-3 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-2\"><p><b>Funding for this work was generously provided by:<\/b><\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-4 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1216.8px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-4 fusion_builder_column_1_4 1_4 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:25%;--awb-margin-top-large:0px;--awb-spacing-right-large:7.68%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:7.68%;--awb-width-medium:25%;--awb-order-medium:0;--awb-spacing-right-medium:7.68%;--awb-spacing-left-medium:7.68%;--awb-width-small:50%;--awb-order-small:0;--awb-spacing-right-small:3.84%;--awb-spacing-left-small:3.84%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element \" style=\"--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><span class=\" fusion-imageframe imageframe-none imageframe-2 hover-type-none\"><img decoding=\"async\" width=\"200\" height=\"48\" title=\"CPN_logo_Final\" src=\"https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final.png\" data-orig-src=\"https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final-200x48.png\" alt class=\"lazyload img-responsive wp-image-4029\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27246%27%20viewBox%3D%270%200%201024%20246%27%3E%3Crect%20width%3D%271024%27%20height%3D%27246%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final-200x48.png 200w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final-400x96.png 400w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final-600x144.png 600w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final-800x192.png 800w, https:\/\/lab.research.sickkids.ca\/iouch\/wp-content\/uploads\/sites\/33\/2025\/05\/CPN_logo_Final.png 1024w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 1004px) 100vw, (max-width: 408px) 100vw, 400px\" \/><\/span><\/div><\/div><\/div><\/div><\/div><\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":455,"featured_media":0,"parent":15,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"footnotes":""},"class_list":["post-3097","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.0 (Yoast SEO v27.0) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>CaPCHR - iOUCH Pain Lab<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lab.research.sickkids.ca\/iouch\/research-studies\/capchr-registry\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"CaPCHR\" \/>\n<meta property=\"og:url\" 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