{"id":28319,"date":"2024-05-24T17:30:32","date_gmt":"2024-05-24T21:30:32","guid":{"rendered":"https:\/\/cdtrp.ca\/?p=28319"},"modified":"2024-05-24T17:33:07","modified_gmt":"2024-05-24T21:33:07","slug":"pfd-forum-program-highlight-high-value-research-the-role-of-patient-engagement-in-clinical-research-2","status":"publish","type":"post","link":"https:\/\/cdtrp.ca\/en\/pfd-forum-program-highlight-high-value-research-the-role-of-patient-engagement-in-clinical-research-2\/","title":{"rendered":"PFD Forum Program Highlight: <BR>A Roadmap to Youth Engagement in Clinical Trials: <BR>Lessons for Donation and Transplantation Research"},"content":{"rendered":"<p><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container 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-0 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:0px;--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-image-element \" style=\"text-align:center;--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-dropshadow imageframe-1 hover-type-none\" style=\"-webkit-box-shadow: 3px 3px 7px rgba(0,0,0,0.3);box-shadow: 3px 3px 7px rgba(0,0,0,0.3);\"><a class=\"fusion-no-lightbox\" href=\"https:\/\/cdtrp.ca\/en\/events\/patient-family-and-donor-research-forum-2024\/\" target=\"_self\" aria-label=\"PFD Forum 2024- YouTube thumbnail &#8211; Smith\"><img decoding=\"async\" width=\"1600\" height=\"900\" alt=\"Image of woman wearing colorful scarf\" src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith.png\" data-orig-src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith.png\" class=\"lazyload img-responsive wp-image-28321\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271600%27%20height%3D%27900%27%20viewBox%3D%270%200%201600%20900%27%3E%3Crect%20width%3D%271600%27%20height%3D%27900%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith-200x113.png 200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith-400x225.png 400w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith-600x338.png 600w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith-800x450.png 800w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith-1200x675.png 1200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2024\/05\/PFD-Forum-2024-YouTube-thumbnail-Smith.png 1600w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 1024px) 100vw, (max-width: 640px) 100vw, 1200px\" \/><\/a><\/span><\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:30px;margin-bottom:30px;width:100%;\"><div class=\"fusion-separator-border sep-double sep-solid\" style=\"--awb-height:20px;--awb-amount:20px;border-color:#e0dede;border-top-width:1px;border-bottom-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-1\" style=\"--awb-text-color:#000000;\"><p style=\"text-align: center;\" data-pm-slice=\"1 3 &#091;&#093;\"><strong>Register for the Canadian Donation and Transplantation Research Program\u2019s 2024 Patient, Family, and Donor Research Forum!<\/strong><\/p>\n<p style=\"text-align: center;\" data-pm-slice=\"1 1 &#091;&#093;\"><strong>2024 Patient, Family, and Donor Research Forum Program Highlight! <\/strong><\/p>\n<p>Join us for a practical session on engaging youth in health research. Patient engagement leaders from INFORM RARE, a\u00a0pediatric\u00a0rare disease research network, will share lessons learned on their youth engagement (ages 12-18) and discuss the special considerations when engaging with youth.\u00a0And we\u2019ll be sure to share perspectives on engagement and activities from the youth themselves.<\/p>\n<p>The session will be lead by Maureen Smith&#8217;s, who co-leads patient engagement for INFORM RARE, a rare disease pediatric research network and is a member of the ACT Consortium\u2019s Patient Engagement Committee and Training Committee. Maureen has the privilege of leading the IMPaCT Training Platform\u2019s parent and youth mentorship program. In June 2023 Maureen was appointed Adjunct Professor at the University of Toronto Dalla Lana School of Public Health, a recognition of the expertise she has acquired in patient engagement as a person with lived experience.<\/p>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:10px;margin-bottom:10px;width:100%;\"><\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-2 fusion-flex-container 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-background-color:#2b4257;--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-1 fusion_builder_column_3_5 3_5 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:60%;--awb-margin-top-large:0px;--awb-spacing-right-large:3.2%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:3.2%;--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\" style=\"--awb-font-size:var(--awb-typography1-font-size);--awb-line-height:var(--awb-typography1-line-height);--awb-letter-spacing:var(--awb-typography1-letter-spacing);--awb-text-transform:uppercase;--awb-text-color:#ffffff;--awb-text-font-family:-apple-system, BlinkMacSystemFont, &#039;Segoe UI&#039;, Roboto, Oxygen-Sans, Ubuntu, Cantarell, &#039;Helvetica Neue&#039; ,sans-serif;--awb-text-font-style:normal;--awb-text-font-weight:700;\"><p class=\"white-text\" style=\"font-weight: bold; text-align: center;\">Learn more <a href=\"https:\/\/cdtrp.ca\/en\/events\/patient-family-and-donor-research-forum-2024\/\">here<\/a>!<\/p>\n<\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 fusion_builder_column_2_5 2_5 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:40%;--awb-margin-top-large:0px;--awb-spacing-right-large:4.8%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:4.8%;--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-3\" style=\"--awb-font-size:var(--awb-typography1-font-size);--awb-line-height:var(--awb-typography1-line-height);--awb-letter-spacing:var(--awb-typography1-letter-spacing);--awb-text-transform:uppercase;--awb-text-color:#ffffff;--awb-text-font-family:-apple-system, BlinkMacSystemFont, &#039;Segoe UI&#039;, Roboto, Oxygen-Sans, Ubuntu, Cantarell, &#039;Helvetica Neue&#039; ,sans-serif;--awb-text-font-style:normal;--awb-text-font-weight:700;\"><p class=\"white-text\" style=\"font-weight: bold; text-align: center;\">Register <a href=\"https:\/\/bit.ly\/4bvhNr6\">here<\/a>!<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":8,"featured_media":28321,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,75],"tags":[],"class_list":["post-28319","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-general","category-featured"],"_links":{"self":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/posts\/28319"}],"collection":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/users\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/comments?post=28319"}],"version-history":[{"count":3,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/posts\/28319\/revisions"}],"predecessor-version":[{"id":28325,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/posts\/28319\/revisions\/28325"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/media\/28321"}],"wp:attachment":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/media?parent=28319"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/categories?post=28319"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/tags?post=28319"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}