{"id":1518,"date":"2017-08-31T16:42:59","date_gmt":"2017-08-31T16:42:59","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/dimaras\/?page_id=1518"},"modified":"2022-10-19T23:52:29","modified_gmt":"2022-10-19T23:52:29","slug":"researchers","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/dimaras\/research\/engagement\/registry\/researchers\/","title":{"rendered":"Researchers"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 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:20px;--awb-padding-bottom:20px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-one-full fusion-column-first fusion-column-last\" style=\"--awb-bg-size:cover;\"><div class=\"fusion-column-wrapper fusion-flex-column-wrapper-legacy\"><div class=\"fusion-title title fusion-title-1 fusion-title-center fusion-title-text fusion-title-size-two\" style=\"--awb-sep-color:#0046ad;\"><div class=\"title-sep-container title-sep-container-left\"><div class=\"title-sep sep-double sep-solid\" style=\"border-color:#0046ad;\"><\/div><\/div><span class=\"awb-title-spacer\"><\/span><h2 class=\"fusion-title-heading title-heading-center\" style=\"margin:0;\"><strong>Information for Researchers<\/strong><\/h2><span class=\"awb-title-spacer\"><\/span><div class=\"title-sep-container title-sep-container-right\"><div class=\"title-sep sep-double sep-solid\" style=\"border-color:#0046ad;\"><\/div><\/div><\/div><div class=\"fusion-text fusion-text-1\"><p>As a part of the Canadian Retinoblastoma Research Community, individuals can choose to be contacted by the researchers regarding research opportunities to:<\/p>\n<ol>\n<li>Participate in a research study; and<\/li>\n<li>If there is a position available on the research study team.<\/li>\n<\/ol>\n<p>Please complete the <strong><a href=\"https:\/\/lab.research.sickkids.ca\/dimaras\/wp-content\/uploads\/sites\/36\/2017\/08\/Canadian-Retinoblastoma-Research-Registry-Data-Access-Request-Form-Final.pdf\">Data Access Request form<\/a><\/strong> and email the signed PDF to <strong><a href=\"mailto:retinoblastoma.research@sickkids.ca?subject=CRRR:%20Data%20Access%20Request%20Form\">retinoblastoma.research@sickkids.ca<\/a><\/strong>\u00a0if you would like to engage with retinoblastoma survivors and families who are on the registry.<\/p>\n<\/div><div class=\"fusion-aligncenter\"><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\" style=\"--button_accent_color:#ffffff;--button_accent_hover_color:#ffffff;--button_border_hover_color:#ffffff;--button_gradient_top_color:#0e597f;--button_gradient_bottom_color:#0e597f;--button_gradient_top_color_hover:#0e597f;--button_gradient_bottom_color_hover:#0e597f;\" target=\"_blank\" rel=\"noopener noreferrer\" href=\"https:\/\/lab.research.sickkids.ca\/dimaras\/wp-content\/uploads\/sites\/36\/2017\/08\/Canadian-Retinoblastoma-Research-Registry-Data-Access-Request-Form-Final.pdf\"><i class=\" fa fa-download awb-button__icon awb-button__icon--default button-icon-left\" aria-hidden=\"true\"><\/i><span class=\"fusion-button-text awb-button__text awb-button__text--default\">Download the data access request form<\/span><\/a><\/div><div class=\"fusion-title title fusion-title-2 fusion-title-text fusion-title-size-one\" style=\"--awb-margin-top:30px;--awb-margin-bottom:10px;\"><h1 class=\"fusion-title-heading title-heading-left\" style=\"margin:0;\"><h3><strong>FAQ<\/strong><\/h3><\/h1><span class=\"awb-title-spacer\"><\/span><div class=\"title-sep-container\"><div class=\"title-sep sep-double sep-solid\" style=\"border-color:#e0dede;\"><\/div><\/div><\/div><div class=\"accordian fusion-accordian\" style=\"--awb-border-size:1px;--awb-icon-size:13px;--awb-content-font-size:14px;--awb-icon-alignment:left;--awb-hover-color:#f9f9f9;--awb-border-color:#cccccc;--awb-background-color:#ffffff;--awb-divider-color:#e0dede;--awb-divider-hover-color:#e0dede;--awb-icon-color:#ffffff;--awb-title-color:#333333;--awb-content-color:#333333;--awb-icon-box-color:#333333;--awb-toggle-hover-accent-color:#0046ad;--awb-title-font-family:Arial, Helvetica, sans-serif;--awb-title-font-weight:400;--awb-title-font-style:normal;--awb-title-font-size:13px;--awb-content-font-family:Arial, Helvetica, sans-serif;--awb-content-font-style:normal;--awb-content-font-weight:400;\"><div class=\"panel-group fusion-toggle-icon-boxed\" id=\"accordion-1518-1\"><div class=\"fusion-panel panel-default panel-69b797b16d1b03ef5 fusion-toggle-has-divider\"><div class=\"panel-heading\"><h4 class=\"panel-title toggle\" id=\"toggle_69b797b16d1b03ef5\"><a aria-expanded=\"false\" aria-controls=\"69b797b16d1b03ef5\" role=\"button\" data-toggle=\"collapse\" data-parent=\"#accordion-1518-1\" data-target=\"#69b797b16d1b03ef5\" href=\"#69b797b16d1b03ef5\"><span class=\"fusion-toggle-icon-wrapper\" aria-hidden=\"true\"><i class=\"fa-fusion-box active-icon awb-icon-minus\" aria-hidden=\"true\"><\/i><i class=\"fa-fusion-box inactive-icon awb-icon-plus\" aria-hidden=\"true\"><\/i><\/span><span class=\"fusion-toggle-heading\">Who is included in the registry?<\/span><\/a><\/h4><\/div><div id=\"69b797b16d1b03ef5\" class=\"panel-collapse collapse \" aria-labelledby=\"toggle_69b797b16d1b03ef5\"><div class=\"panel-body toggle-content fusion-clearfix\">\n<p>The registry is open to individuals meeting the following criteria:<\/p>\n<ul>\n<li>A retinoblastoma survivor or the immediate family of someone diagnosed with retinoblastoma;<\/li>\n<li>18 years of age or older or an emancipated minor (i.e. are married and\/or a parent); and<\/li>\n<li>A resident of Canada.<\/li>\n<\/ul>\n<p>Currently, there are over 40 registrants. It is our aim to have 360 registrants over the next ten years.<\/p>\n<\/div><\/div><\/div><div class=\"fusion-panel panel-default panel-f732da960f7a3cbbb fusion-toggle-has-divider\"><div class=\"panel-heading\"><h4 class=\"panel-title toggle\" id=\"toggle_f732da960f7a3cbbb\"><a aria-expanded=\"false\" aria-controls=\"f732da960f7a3cbbb\" role=\"button\" data-toggle=\"collapse\" data-parent=\"#accordion-1518-1\" data-target=\"#f732da960f7a3cbbb\" href=\"#f732da960f7a3cbbb\"><span class=\"fusion-toggle-icon-wrapper\" aria-hidden=\"true\"><i class=\"fa-fusion-box active-icon awb-icon-minus\" aria-hidden=\"true\"><\/i><i class=\"fa-fusion-box inactive-icon awb-icon-plus\" aria-hidden=\"true\"><\/i><\/span><span class=\"fusion-toggle-heading\">What information do I need to request registrant information?<\/span><\/a><\/h4><\/div><div id=\"f732da960f7a3cbbb\" class=\"panel-collapse collapse \" aria-labelledby=\"toggle_f732da960f7a3cbbb\"><div class=\"panel-body toggle-content fusion-clearfix\">\n<p>The data request form asks for the following:<\/p>\n<ol>\n<li>Applicant contact information<\/li>\n<li>Research project description<\/li>\n<li><strong>Ethics board approval<\/strong><\/li>\n<li>Justification for data request<\/li>\n<\/ol>\n<\/div><\/div><\/div><div class=\"fusion-panel panel-default panel-a1a9a0faf61d24ef4 fusion-toggle-has-divider\"><div class=\"panel-heading\"><h4 class=\"panel-title toggle\" id=\"toggle_a1a9a0faf61d24ef4\"><a aria-expanded=\"false\" aria-controls=\"a1a9a0faf61d24ef4\" role=\"button\" data-toggle=\"collapse\" data-parent=\"#accordion-1518-1\" data-target=\"#a1a9a0faf61d24ef4\" href=\"#a1a9a0faf61d24ef4\"><span class=\"fusion-toggle-icon-wrapper\" aria-hidden=\"true\"><i class=\"fa-fusion-box active-icon awb-icon-minus\" aria-hidden=\"true\"><\/i><i class=\"fa-fusion-box inactive-icon awb-icon-plus\" aria-hidden=\"true\"><\/i><\/span><span class=\"fusion-toggle-heading\">How long is the data access process?<\/span><\/a><\/h4><\/div><div id=\"a1a9a0faf61d24ef4\" class=\"panel-collapse collapse \" aria-labelledby=\"toggle_a1a9a0faf61d24ef4\"><div class=\"panel-body toggle-content fusion-clearfix\">\n<p>The Canadian Retinoblastoma Research Advisory Board\u2019s (CRRAB) Research Advisory Working Group will review all data access approximately every 6 weeks. The working group will ensure all components of the form are valid in order to approve or reject requests or ask for additional information.<\/p>\n<p>If approved, the Research Advisory Working Group will submit an amendment to REB, including the application of the SickKids scientist named as Co-Investigator and legal. All suitable registrants, using the lease amount of information necessary for the research project, will be extracted from the registry and sent to the study\u2019s PI, using OneMail or Secure File Transfer. Data shared with external researchers will be governed by the confidentiality practices at their institutions. <strong>Altogether, data access requests have a two- to three-month turnaround period.<\/strong><\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-title title fusion-title-3 fusion-title-text fusion-title-size-one\" style=\"--awb-margin-top:30px;--awb-margin-bottom:10px;\"><h1 class=\"fusion-title-heading title-heading-left\" style=\"margin:0;\"><h3><strong>For more information<\/strong><\/h3><\/h1><span class=\"awb-title-spacer\"><\/span><div class=\"title-sep-container\"><div class=\"title-sep sep-double sep-solid\" style=\"border-color:#e0dede;\"><\/div><\/div><\/div><div class=\"fusion-text fusion-text-2\"><p><strong>Email:<\/strong> <a href=\"mailto:retinoblastoma.research@sickkids.ca\"><u>retinoblastoma.research@sickkids.ca<\/u><\/a><br \/>\n<strong>Call:<\/strong> 416-813-7654 Ext:203287<\/p>\n<\/div><div class=\"fusion-clearfix\"><\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":99,"featured_media":0,"parent":93,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-1518","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.0 (Yoast SEO v27.0) - 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