{"id":1581,"date":"2022-09-01T00:00:38","date_gmt":"2022-08-31T23:00:38","guid":{"rendered":"https:\/\/blogs.exeter.ac.uk\/eri\/?p=1581"},"modified":"2022-09-01T00:00:38","modified_gmt":"2022-08-31T23:00:38","slug":"widening-participation-for-orphan-drug-trials","status":"publish","type":"post","link":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/","title":{"rendered":"Widening participation for orphan drug trials"},"content":{"rendered":"<p>Orphan drugs are medicines for diagnosis, prevention or treatment of life-threatening or progressive disorders that are rare (affecting less than 1 in 2,000 people). An example is Idiopathic Pulmonary Fibrosis (IPF).<\/p>\n<p>We are approaching a number of people who have Idiopathic Pulmonary Fibrosis (IPF) to learn more about how and why they have or have not been referred to trials of new drugs for IPF and their experiences of participating in any trials of new drugs.<\/p>\n<p>Dr Julia Frost of the University of Exeter, an experienced healthcare researcher, would like to interview people with IPF (by phone or internet) about their experiences of having IPF; referral to and participation in clinical trials of drugs for rare diseases, or non-participation. This study is funded by UK Research and Innovation (Medical Research Council) (MR\/W003732\/1).<\/p>\n<p><a href=\"https:\/\/sites.exeter.ac.uk\/eri\/wp-content\/uploads\/sites\/277\/2022\/09\/304904-Widening_Engagement_Participant-Information-Sheet_Patients_SHORT_v2.0.docx\">Click here for more information<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Orphan drugs are medicines for diagnosis, prevention or treatment of life-threatening or progressive disorders that are rare (affecting less than 1 in 2,000 people). An example is Idiopathic Pulmonary Fibrosis (IPF). We are approaching a number of people who have Idiopathic Pulmonary Fibrosis (IPF) to learn more about how and why they have or have [&hellip;]<\/p>\n","protected":false},"author":1049,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[3,43,15],"tags":[],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Widening participation for orphan drug trials - Exeter Respiratory Research &amp; Innovation (ERI)<\/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:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Widening participation for orphan drug trials - Exeter Respiratory Research &amp; Innovation (ERI)\" \/>\n<meta property=\"og:description\" content=\"Orphan drugs are medicines for diagnosis, prevention or treatment of life-threatening or progressive disorders that are rare (affecting less than 1 in 2,000 people). An example is Idiopathic Pulmonary Fibrosis (IPF). We are approaching a number of people who have Idiopathic Pulmonary Fibrosis (IPF) to learn more about how and why they have or have [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/\" \/>\n<meta property=\"og:site_name\" content=\"Exeter Respiratory Research &amp; Innovation (ERI)\" \/>\n<meta property=\"article:published_time\" content=\"2022-08-31T23:00:38+00:00\" \/>\n<meta name=\"author\" content=\"pfc202\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"pfc202\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/\",\"url\":\"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/\",\"name\":\"Widening participation for orphan drug trials - Exeter Respiratory Research & Innovation (ERI)\",\"isPartOf\":{\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/#website\"},\"datePublished\":\"2022-08-31T23:00:38+00:00\",\"dateModified\":\"2022-08-31T23:00:38+00:00\",\"author\":{\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/#\/schema\/person\/26097e72047cdb1924ea4edd5998ad55\"},\"breadcrumb\":{\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/sites.exeter.ac.uk\/eri\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Widening participation for orphan drug trials\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/#website\",\"url\":\"https:\/\/sites.exeter.ac.uk\/eri\/\",\"name\":\"Exeter Respiratory Research & Innovation (ERI)\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/sites.exeter.ac.uk\/eri\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"},{\"@type\":\"Person\",\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/#\/schema\/person\/26097e72047cdb1924ea4edd5998ad55\",\"name\":\"pfc202\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/sites.exeter.ac.uk\/eri\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/268bf278b3371f737ca63234656e93e4?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/268bf278b3371f737ca63234656e93e4?s=96&d=mm&r=g\",\"caption\":\"pfc202\"},\"url\":\"https:\/\/sites.exeter.ac.uk\/eri\/author\/pfc202\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Widening participation for orphan drug trials - Exeter Respiratory Research & Innovation (ERI)","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/","og_locale":"en_US","og_type":"article","og_title":"Widening participation for orphan drug trials - Exeter Respiratory Research & Innovation (ERI)","og_description":"Orphan drugs are medicines for diagnosis, prevention or treatment of life-threatening or progressive disorders that are rare (affecting less than 1 in 2,000 people). An example is Idiopathic Pulmonary Fibrosis (IPF). We are approaching a number of people who have Idiopathic Pulmonary Fibrosis (IPF) to learn more about how and why they have or have [&hellip;]","og_url":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/","og_site_name":"Exeter Respiratory Research & Innovation (ERI)","article_published_time":"2022-08-31T23:00:38+00:00","author":"pfc202","twitter_card":"summary_large_image","twitter_misc":{"Written by":"pfc202","Est. reading time":"1 minute"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/","url":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/","name":"Widening participation for orphan drug trials - Exeter Respiratory Research & Innovation (ERI)","isPartOf":{"@id":"https:\/\/sites.exeter.ac.uk\/eri\/#website"},"datePublished":"2022-08-31T23:00:38+00:00","dateModified":"2022-08-31T23:00:38+00:00","author":{"@id":"https:\/\/sites.exeter.ac.uk\/eri\/#\/schema\/person\/26097e72047cdb1924ea4edd5998ad55"},"breadcrumb":{"@id":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/sites.exeter.ac.uk\/eri\/2022\/09\/01\/widening-participation-for-orphan-drug-trials\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/sites.exeter.ac.uk\/eri\/"},{"@type":"ListItem","position":2,"name":"Widening participation for orphan drug trials"}]},{"@type":"WebSite","@id":"https:\/\/sites.exeter.ac.uk\/eri\/#website","url":"https:\/\/sites.exeter.ac.uk\/eri\/","name":"Exeter Respiratory Research & Innovation (ERI)","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/sites.exeter.ac.uk\/eri\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-US"},{"@type":"Person","@id":"https:\/\/sites.exeter.ac.uk\/eri\/#\/schema\/person\/26097e72047cdb1924ea4edd5998ad55","name":"pfc202","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/sites.exeter.ac.uk\/eri\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/268bf278b3371f737ca63234656e93e4?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/268bf278b3371f737ca63234656e93e4?s=96&d=mm&r=g","caption":"pfc202"},"url":"https:\/\/sites.exeter.ac.uk\/eri\/author\/pfc202\/"}]}},"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"","_links":{"self":[{"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/posts\/1581"}],"collection":[{"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/users\/1049"}],"replies":[{"embeddable":true,"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/comments?post=1581"}],"version-history":[{"count":0,"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/posts\/1581\/revisions"}],"wp:attachment":[{"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/media?parent=1581"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/categories?post=1581"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sites.exeter.ac.uk\/eri\/wp-json\/wp\/v2\/tags?post=1581"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}