{"id":14068,"date":"2021-11-09T08:32:47","date_gmt":"2021-11-09T13:32:47","guid":{"rendered":"https:\/\/cdtrp.ca\/?p=14068"},"modified":"2021-11-09T10:58:21","modified_gmt":"2021-11-09T15:58:21","slug":"pfd-forum-2021-success","status":"publish","type":"post","link":"https:\/\/cdtrp.ca\/en\/pfd-forum-2021-success\/","title":{"rendered":"The CDTRP 2021 Patient, Family and Donor Research Forum was a collaborative success"},"content":{"rendered":"<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\/pfdrf2021\/\" target=\"_self\" aria-label=\"PFD Forum &#8211; Website Header\"><img decoding=\"async\" width=\"1024\" height=\"341\" src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header.png\" data-orig-src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header-1024x341.png\" alt class=\"lazyload img-responsive wp-image-12918\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271500%27%20height%3D%27500%27%20viewBox%3D%270%200%201500%20500%27%3E%3Crect%20width%3D%271500%27%20height%3D%27500%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header-200x67.png 200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header-400x133.png 400w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header-600x200.png 600w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header-800x267.png 800w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header-1200x400.png 1200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/09\/PFD-Forum-Website-Header.png 1500w\" 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\"><h4>The CDTRP 2021 Patient, Family and Donor Research Forum was a collaborative success<\/h4>\n<p>This CDTRP\u2019s virtual 2021 Research Forum was a huge success: it provided\u00a0an excellent opportunity to inform and advance collaborations between investigators and patients, family, and donors as active contributors to the success of various projects. About <strong>190 participants from six different countries<\/strong> registered for this Forum.<\/p>\n<p><strong>The objectives of this Research Forum were three-fold:<\/strong><\/p>\n<ol>\n<li>To showcase the work of senior and junior researchers that has evolved with the addition of a patient, family, donor perspective.<\/li>\n<li>To help senior and junior researchers who are seeking live feedback on their work from patients,\u00a0families,\u00a0or donors.<\/li>\n<li>To support patients,\u00a0families,\u00a0and donors to develop PFD-led research projects or ideas of how PFDs can be included in ongoing transplant and donation initiatives.<\/li>\n<\/ol>\n<\/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-single sep-solid\" style=\"--awb-height:20px;--awb-amount:20px;border-color:#e0dede;border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-2\"><h5><strong>Highlights from presentations and panel discussions <\/strong><\/h5>\n<p>The morning of the Forum\u2019s <strong>first day<\/strong> centered on discussions related to families and caregivers. Some mentioned the benefits that can occur with patient engagement in research projects:<\/p>\n<ul>\n<li>Improves patient and health system outcomes<\/li>\n<li>Improves quality of care<\/li>\n<li>Improves the quality and relevance of research<\/li>\n<li>Provides new ideas not previously considered<\/li>\n<li>Facilitates the recruitment and dissemination of results<\/li>\n<li>Promotes the transfer of knowledge and the translation of research results into practice<\/li>\n<li>Empowers patients, families, and donors<\/li>\n<\/ul>\n<p>Afterwards, participants learned about the vast social and economic impacts of caregiving, an overview of resources available to support them, and a discussion of current knowledge gaps in caregiving policy and research.<\/p>\n<p>The afternoon of the Forum\u2019s first day focused on transplant patients. First, how organs can be better utilized in Canada was explained, followed by how PFDs can be engaged at the World Transplant Games. Next, discussions ensued examining how to improve engagement and empower patients on their transplant journey and how PFDs are being engaged in the development of recommendations to improve the organ donation and transplantation system throughout Canada.<\/p>\n<p>On <strong>Day 2<\/strong>, the morning concentrated on living organ donation and education. After hearing a moving living organ donation story telling us what living donation means for the recipient, their family, and the donor, participants then heard about how school children are being taught about organ donation in Alberta and in Ontario.<\/p>\n<p>For the afternoon of Day 2, the theme was engaging PFDs in research. The patient-focused website www.mykidneysmyhealth.com was explained, which was created for kidney patients by fellow patients. Lastly, participants heard from three Indigenous perspectives on their patient-oriented research journey and how to build cultural competency.<\/p>\n<\/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-3 fusion-animated\" data-animationType=\"fadeInDown\" data-animationDuration=\"0.8\" data-animationOffset=\"top-into-view\"><h5 style=\"text-align: center;\">If you missed attending some of this Research Forum, recordings of each day\u2019s sections will be posted soon on the CDTRP website.<\/h5>\n<h5 style=\"text-align: center;\">To help us improve participation and satisfaction with our events, we would appreciate if you could please take a few minutes to complete our Forum\u2019s survey below.<\/h5>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:20px;width:100%;\"><\/div><div style=\"text-align:center;\"><a class=\"fusion-button button-flat fusion-button-default-size button-custom fusion-button-default button-1 fusion-button-default-span fusion-button-default-type fusion-animated\" style=\"--button_accent_color:#ffffff;--button_border_color:#ffffff;--button_accent_hover_color:#edf2f7;--button_border_hover_color:#ffffff;--button_gradient_top_color:#aa0e13;--button_gradient_bottom_color:#aa0e13;--button_gradient_top_color_hover:#aa0e13;--button_gradient_bottom_color_hover:#aa0e13;--button_text_transform:uppercase;\" data-animationType=\"bounceInDown\" data-animationDuration=\"0.8\" data-animationOffset=\"top-into-view\" target=\"_self\" href=\"https:\/\/survey.ca1.qualtrics.com\/jfe\/form\/SV_1BoWID4nyJUuqbk\"><span class=\"fusion-button-text\">Give us your opinion<\/span><\/a><\/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-4\"><h5><strong>Thanks to our supporters<\/strong><\/h5>\n<p>The CDTRP wants to sincerely thank these sponsors, for promoting the event and helping CDTRP ensure the Forum attracted participants from to coast-to-coast and internationally:<\/p>\n<ul>\n<li><a href=\"https:\/\/www.blood.ca\/en\">Canadian Blood Services<\/a><\/li>\n<li><a href=\"https:\/\/www.canadiantransplant.com\/\">Canadian Transplant Association<\/a><\/li>\n<li><a href=\"https:\/\/canrestore.wordpress.com\/\">Can-Restore<\/a><\/li>\n<li><a href=\"https:\/\/cansolveckd.ca\/\">Can-SOLVE CKD Network<\/a><\/li>\n<li><a href=\"https:\/\/www.cst-transplant.ca\/\">Canadian Society of Transplantation<\/a><\/li>\n<li><a href=\"https:\/\/www.cysticfibrosis.ca\/\">Cystic Fibrosis Canada<\/a><\/li>\n<li><a href=\"https:\/\/kidney.ca\/\">Kidney Foundation<\/a><\/li>\n<li><a href=\"http:\/\/stemcellclub.ca\/\">Stem Cell Club<\/a><\/li>\n<li><a href=\"https:\/\/swabtheworld.com\/en\/\">Swab the World<\/a><\/li>\n<li><a href=\"https:\/\/www.trfbc.org\/\">Transplant Research Foundation of British Columbia<\/a><\/li>\n<li><a href=\"https:\/\/wtgf.org\/\">World Transplant Games Federation<\/a><\/li>\n<\/ul>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:20px;width:100%;\"><\/div><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-2 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\/pfdrf2021\/supporters\/\" target=\"_self\" aria-label=\"PFDRF-2021-Supporters\"><img decoding=\"async\" width=\"1024\" height=\"576\" src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters.png\" data-orig-src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters-1024x576.png\" alt class=\"lazyload img-responsive wp-image-13850\" 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\/2021\/11\/PFDRF-2021-Supporters-200x113.png 200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters-400x225.png 400w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters-600x338.png 600w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters-800x450.png 800w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters-1200x675.png 1200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFDRF-2021-Supporters.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-single sep-solid\" style=\"--awb-height:20px;--awb-amount:20px;border-color:#e0dede;border-top-width:1px;\"><\/div><\/div><div class=\"fusion-text fusion-text-5\"><h5><strong>Special thanks also to the Forum planning committee:<\/strong><\/h5>\n<ul>\n<li>Chairs <strong>Linda Powell<\/strong> (caregiver to a waitlisted patient) and <strong>Larry Worfolk<\/strong> (lung transplant recipient);<\/li>\n<li><strong>Sarah Middleton<\/strong> (non-directed living donor), <strong>Joanna Mitchell<\/strong> (caregiver to a pediatric heart transplant recipient), <strong>Sarah Douglas<\/strong> (ODTC \u2013 Health Canada) and <strong>Dr. Rahul Mainra<\/strong> (Canadian Society of Transplantation).<\/li>\n<\/ul>\n<\/div><div class=\"fusion-separator fusion-full-width-sep\" style=\"align-self: center;margin-left: auto;margin-right: auto;margin-top:20px;margin-bottom:20px;width:100%;\"><\/div><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-3 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);\"><img decoding=\"async\" width=\"1024\" height=\"576\" title=\"PFD Forum &#8211; Landing slides\" src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides.png\" data-orig-src=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides-1024x576.png\" alt class=\"lazyload img-responsive wp-image-14083\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271920%27%20height%3D%271080%27%20viewBox%3D%270%200%201920%201080%27%3E%3Crect%20width%3D%271920%27%20height%3D%271080%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides-200x113.png 200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides-400x225.png 400w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides-600x338.png 600w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides-800x450.png 800w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides-1200x675.png 1200w, https:\/\/cdtrp.ca\/wp-content\/uploads\/2021\/11\/PFD-Forum-Landing-slides.png 1920w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 1024px) 100vw, (max-width: 640px) 100vw, 1200px\" \/><\/span><\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":6,"featured_media":12918,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,75],"tags":[],"class_list":["post-14068","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\/14068"}],"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\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/comments?post=14068"}],"version-history":[{"count":7,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/posts\/14068\/revisions"}],"predecessor-version":[{"id":14131,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/posts\/14068\/revisions\/14131"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/media\/12918"}],"wp:attachment":[{"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/media?parent=14068"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/categories?post=14068"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cdtrp.ca\/en\/wp-json\/wp\/v2\/tags?post=14068"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}