{"id":1426,"date":"2021-10-23T03:11:39","date_gmt":"2021-10-23T03:11:39","guid":{"rendered":"https:\/\/barthsyndrome.ca\/?page_id=1426"},"modified":"2022-06-07T15:35:52","modified_gmt":"2022-06-07T15:35:52","slug":"opportunities-to-help-with-barth-syndrome-research","status":"publish","type":"page","link":"https:\/\/barthsyndrome.ca\/opportunities-to-help-with-barth-syndrome-research\/","title":{"rendered":"Opportunities to help with Barth Syndrome Research"},"content":{"rendered":"<p><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container fusion-parallax-none nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-background-position:center top;--awb-background-blend-mode:darken;--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:18%;--awb-padding-bottom:3%;--awb-background-image:linear-gradient(0deg, rgba(10,92,152,0) 66%,#0a5c98 100%),url(https:\/\/barthsyndrome.ca\/wp-content\/uploads\/2021\/10\/BarthBackground-Robert-2.jpg);;--awb-background-size:cover;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:calc( 1140px + 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_5 2_5 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:40%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--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><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 fusion_builder_column_3_5 3_5 fusion-flex-column fusion-animated\" style=\"--awb-padding-bottom:91px;--awb-bg-position:center center;--awb-bg-size:cover;--awb-width-large:60%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\" data-animationType=\"fadeInUp\" data-animationDuration=\"1.0\" data-animationOffset=\"top-into-view\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-center fusion-title-text fusion-title-size-two\" style=\"--awb-text-color:#ffffff;--awb-font-size:60px;\"><h2 class=\"fusion-title-heading title-heading-center fusion-responsive-typography-calculated\" style=\"margin:0;font-size:1em;letter-spacing:-3px;--fontSize:60;line-height:1;\">Opportunities to help with<br \/>Barth Syndrome Research<\/h2><\/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-padding-top:6%;--awb-padding-bottom:4%;--awb-background-color:rgba(247,235,249,0);--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:calc( 1140px + 0px );margin-left: calc(-0px \/ 2 );margin-right: calc(-0px \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 fusion_builder_column_1_1 1_1 fusion-flex-column fusion-animated\" style=\"--awb-padding-right:40px;--awb-padding-bottom:20px;--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\" data-animationType=\"fadeInUp\" data-animationDuration=\"1.0\" data-animationOffset=\"top-into-view\"><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>By participating in a research project, you can play a role in helping physicians and other researchers develop and test better ways to diagnose and treat individuals affected by Barth syndrome.  You can make a difference! Please consider becoming a research participant today.  See the video below &#8211; &#8220;The Critical Role of Patients in Rare Disease Clinical Trials&#8221;.<\/p>\n<\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-3 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-overflow:hidden;--awb-bg-size:cover;--awb-border-radius:8px 8px 8px 8px;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:44px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--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-video fusion-vimeo\" style=\"--awb-max-width:1200px;--awb-max-height:675px;--awb-align-self:center;--awb-width:100%;\"><div class=\"video-shortcode\"><div class=\"fluid-width-video-wrapper\" style=\"padding-top:56.25%;\" ><iframe title=\"Vimeo video player 1\" src=\"https:\/\/player.vimeo.com\/video\/315730597?h=70d18b774b?autoplay=0&autopause=0\" width=\"1200\" height=\"675\" allowfullscreen allow=\"autoplay; fullscreen\"><\/iframe><\/div><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-4 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:0px;--awb-margin-bottom-large:21px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--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-title title fusion-title-2 fusion-sep-none fusion-title-text fusion-title-size-three\" style=\"--awb-margin-bottom:0px;\"><h3 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"margin:0;--fontSize:30;line-height:1.33;\">Clinical Trials, Studies, and Ways to Help<\/h3><\/div><div class=\"fusion-text fusion-text-2\"><p>For information see BSF for <a href=\"https:\/\/www.barthsyndrome.org\/research\/clinicaltrials\/clinicaltrials.html\" target=\"_blank\" rel=\"noopener noreferrer\"><u>Clinical Trials<\/u><\/a> and the <u><a href=\"https:\/\/www.barthsyndrome.org\/file_download\/inline\/c71a682c-a952-4f1a-a241-fcba6c5820dc\" target=\"_blank\" rel=\"noopener noreferrer\">Policy on Clinical Trials and Clinical Studies<\/a><\/u>. (.PDF)<\/p>\n<p style=\"font-size: 22px;\" data-fusion-font=\"true\"><b>Gene Replacement Therapy for Barth Syndrome<\/b><\/p>\n<p>Gene replacement therapy is the most promising gene therapy for individuals with Barth syndrome. A functional <i>tafazzin<\/i> gene is added to many of the cells of the body and compensates for the native dysfunctional <i>tafazzin<\/i> gene \u2013 the cause of Barth syndrome. The details of <b>if <\/b>and <b>how<\/b> for a gene replacement therapy clinical trial for Barth syndrome are being developed and regulatory approval will be sought. Enrollment may be 1.5 to 2 years away. <a href=\"https:\/\/www.barthsyndrome.org\/research\/clinicaltrials\/genereplacementtherapy.html\" target=\"_blank\" rel=\"noopener noreferrer\"><u>See BSF for further information<\/u><\/a>.<\/p>\n<\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-5 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:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--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-title title fusion-title-3 fusion-sep-none fusion-title-text fusion-title-size-three\" style=\"--awb-margin-bottom:0px;\"><h3 class=\"fusion-title-heading title-heading-left fusion-responsive-typography-calculated\" style=\"margin:0;--fontSize:30;line-height:1.33;\">Barth Syndrome Registry and Repository<\/h3><\/div><div class=\"fusion-text fusion-text-3\"><p>The purpose of the Barth Syndrome Registry and Repository (BRR) is to amass the information and biological specimens from individuals with Barth syndrome (BTHS) into a single database which will be utilized by researchers to better understand Barth syndrome. Through our families&#8217; contribution to the BRR, knowledge is gained, research is facilitated, and differences are being made.<\/p>\n<p>The BRR empowers every person who has BTHS and family members around the world to make a difference in the fight to conquer BTHS. By participating in the BRR and completing your profile survey about your own unique experience with BTHS, you are contributing to a global database about the accessibility of diagnosis, care and treatments, and disease severity of BTHS. The BRR is a centralized resource that is vital to helping researchers learn more about BTHS, accelerating the development of new research and treatments, identifying issues that need research, and improving the care of all those with BTHS.<\/p>\n<p>The BRR recognizes the importance of global collaboration. One of the goals of the Registry is to enable researchers from around the world to work together to speed up the research progress. The BRR connects all those interested in accelerating BTHS research &#8211; affected individuals, families and researchers &#8211; with a resource that has never before been available in one place.<\/p>\n<p>Every person counts in the fight against BTHS. As a participant in the BRR, you will be able to explore data and view how your answers may compare to others. You will also have access to information about new research for BTHS and ways to participate in studies and clinical trials. By logging into your profile, you can review the results of published and unpublished studies that result from the BRR.<\/p>\n<p>To get started, and to learn more about the Barth Syndrome Registry at <a href=\"https:\/\/barthsyndromeregistry.patientcrossroads.org\/\" target=\"_blank\" rel=\"noopener noreferrer\"><u>https:\/\/barthsyndromeregistry.patientcrossroads.org\/<\/u><\/a>.<\/p>\n<\/div><\/div><\/div><\/div><\/div><div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-3 fusion-flex-container fusion-parallax-none nonhundred-percent-fullwidth non-hundred-percent-height-scrolling fusion-animated\" style=\"--awb-background-position:center bottom;--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-bottom:4%;--awb-background-image:linear-gradient(180deg, #ffffff 0%,rgba(231,204,182,0.49) 100%),url(https:\/\/barthsyndrome.ca\/wp-content\/uploads\/2019\/10\/cta-background-mandala.jpg);;--awb-background-size:cover;--awb-flex-wrap:wrap;\" data-animationType=\"bounceInDown\" data-animationDuration=\"1.1\" data-animationOffset=\"top-into-view\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1185.6px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-6 fusion_builder_column_1_6 1_6 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:16.666666666667%;--awb-margin-top-large:0px;--awb-spacing-right-large:11.52%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:11.52%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--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><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-7 fusion_builder_column_2_3 2_3 fusion-flex-column fusion-animated\" style=\"--awb-padding-top:60px;--awb-padding-right:30px;--awb-padding-bottom:60px;--awb-padding-left:30px;--awb-overflow:hidden;--awb-bg-color:#ffffff;--awb-bg-color-hover:#ffffff;--awb-bg-image:linear-gradient(0deg, rgba(231,204,182,0.76) 0%,rgba(231,204,182,0) 100%);--awb-bg-size:cover;--awb-box-shadow:0px 10px 30px 0px rgba(204,176,146,0.88);;--awb-border-radius:12px 12px 12px 12px;--awb-width-large:66.666666666667%;--awb-margin-top-large:-30px;--awb-spacing-right-large:2.88%;--awb-margin-bottom-large:60px;--awb-spacing-left-large:2.88%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\" data-animationType=\"rubberBand\" data-animationDuration=\"1.7\" data-animationOffset=\"top-into-view\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-4 fusion-sep-none fusion-title-center fusion-title-text fusion-title-size-two\" style=\"--awb-margin-top:-30px;--awb-margin-bottom:10px;--awb-margin-bottom-small:10px;--awb-font-size:60px;\"><h2 class=\"fusion-title-heading title-heading-center fusion-responsive-typography-calculated\" style=\"margin:0;font-size:1em;--fontSize:60;line-height:1;\">Donate please!<\/h2><\/div><div class=\"fusion-text fusion-text-4\"><p style=\"text-align: center;\">The Barth Syndrome Foundation of Canada is a completely volunteer, charitable foundation. We fund critical research and provide support and information to affected individuals, families, and medical professionals.<\/p>\n<\/div><div style=\"text-align:center;\"><a class=\"fusion-button button-flat fusion-button-default-size button-default fusion-button-default button-1 fusion-button-default-span fusion-button-default-type\" style=\"--button_text_transform:uppercase;\" target=\"_self\" href=\"https:\/\/barthsyndrome.ca\/donate\/\"><span class=\"fusion-button-text\">Click Here to DOnate<\/span><\/a><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-8 fusion_builder_column_1_6 1_6 fusion-flex-column fusion-no-small-visibility fusion-no-medium-visibility\" style=\"--awb-bg-size:cover;--awb-width-large:16.666666666667%;--awb-margin-top-large:0px;--awb-spacing-right-large:11.52%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:11.52%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--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><\/div><\/div><\/div>\n<\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - 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