{"id":59130,"date":"2020-04-13T20:51:04","date_gmt":"2020-04-14T00:51:04","guid":{"rendered":"https:\/\/rarediseases.org\/findings-from-nord-and-frontline-medical-communications-survey-highlight-gene-therapy-knowledge-gaps-among-hcps\/"},"modified":"2020-04-13T20:51:04","modified_gmt":"2020-04-14T00:51:04","slug":"findings-from-nord-and-frontline-medical-communications-survey-highlight-gene-therapy-knowledge-gaps-among-hcps","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/findings-from-nord-and-frontline-medical-communications-survey-highlight-gene-therapy-knowledge-gaps-among-hcps\/","title":{"rendered":"Findings from NORD and Frontline Medical Communications Survey Highlight Gene Therapy Knowledge Gaps Among HCPs"},"content":{"rendered":"<p>With the availability of several promising gene therapies and more on the horizon, a\u00a0<a href=\"https:\/\/www.mdedge.com\/neurology\/genetherapysurvey\" rel=\"nofollow noopener\" target=\"_blank\"><strong>recent survey<\/strong><\/a>\u00a0published in\u00a0<em>Neurology Reviews\u2019\u00a0<\/em>6<sup>th<\/sup>\u00a0annual\u00a0<a href=\"https:\/\/www.neurologyreviews-digital.com\/neurologyreviews\/nord_march_2020\/MobilePagedReplica.action?pm=2&amp;folio=Cover#pg1\" rel=\"nofollow noopener\" target=\"_blank\"><strong><em>Rare Neurological Disease Special Report<\/em><\/strong><\/a>\u00a0indicates that many potential prescribers are unaware of the life-changing potential of gene therapy. The survey, a joint undertaking by the National Organization for Rare Disorders (NORD\u00ae) and Frontline Medical Communications (FMC), was completed by a representative sample of health care providers across a variety of specialties and practice settings. Nearly two-thirds of respondents (63%) were unaware of FDA-approved gene therapy options, such as Kymriah\u2122, Luxturna\u00ae and Zolgensma\u00ae, and although respondents reported treating an average of five patients with a rare genetic disorder, few recognized the range of potential benefits of gene therapy, how it is administered, long-term impacts, and mechanisms by which it works.<\/p>\n<p>A notable finding is the limited comfort level expressed by respondents in their knowledge base and ability to discuss genetic concepts with patients. Just 24% rated themselves as comfortable or extremely comfortable explaining somatic vs. germline mutations, and responses also identified unfamiliarity with gene delivery and administration options. The survey underscored the need for provider education on topics related to gene therapy, which is currently being seen as a potentially curative treatment for some rare disorders.<\/p>\n<p>Concern that gene therapy will be cost-prohibitive (69%) and\/or that patient access will be limited due to lack of insurance coverage (67%) ranked highly as perceived barriers.<\/p>\n<p>\u201cIt is vital to develop strategies to ensure consistent and viable reimbursement models and to create multi-faceted, accessible educational outreach programs for the medical community at large,\u201d said Katie Kowalski, Senior Program Manager of Educational Initiatives for NORD. \u201cIt is important for rare disease patients to be offered the opportunity to participate in clinical trials, and for clinicians to have accessible platforms to learn more about gene therapy so they can inform their patients about these treatment options.\u201d<\/p>\n<p>Full survey findings are discussed in the article,\u00a0<a href=\"https:\/\/www.mdedge.com\/neurology\/genetherapysurvey\" rel=\"nofollow noopener\" target=\"_blank\"><strong>Gene Therapy Survey Highlights: Knowledge Gaps and Educational Opportunities<\/strong><\/a>. Readers can also read more about barriers preventing health care providers from embracing gene therapy advances as therapeutic tools in the 6<sup>th<\/sup>\u00a0edition of the\u00a0<a href=\"https:\/\/www.neurologyreviews-digital.com\/neurologyreviews\/nord_march_2020\/MobilePagedReplica.action?pm=2&amp;folio=Cover#pg1\" rel=\"nofollow noopener\" target=\"_blank\"><strong><em>Rare Neurological Disease Special Report<\/em><\/strong><\/a><a href=\"https:\/\/www.neurologyreviews-digital.com\/neurologyreviews\/nord_march_2020\/MobilePagedReplica.action?pm=2&amp;folio=Cover#pg1\" rel=\"nofollow noopener\" target=\"_blank\">.<\/a><\/p>\n<p>To learn more about the rare disease initiatives through the\u00a0<em>Neurology Reviews<\/em>\u00a0and NORD partnership, contact Elizabeth Katz, Publisher of\u00a0<em>Neurology Reviews,<\/em>\u00a0at 973-224-7951 or\u00a0<a href=\"mailto:ekatz@mdedge.com\">ekatz@mdedge.com<\/a>.\u00a0 Details and information on all FMC\/MDedge digital brands, print publications, and custom programs are available at\u00a0<a href=\"https:\/\/www.mdedge.com\/neurology\" rel=\"nofollow noopener\" target=\"_blank\">www.mdedge.com\/neurology<\/a>; visit weekly for the latest innovative programs and multimedia initiatives.<\/p>\n<p><strong><u>\u00a0<\/u><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>With the availability of several promising gene therapies and more on the horizon, a\u00a0recent survey\u00a0published in\u00a0Neurology Reviews\u2019\u00a06th\u00a0annual\u00a0Rare Neurological Disease Special Report\u00a0indicates that many potential prescribers are unaware of the life-changing &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/findings-from-nord-and-frontline-medical-communications-survey-highlight-gene-therapy-knowledge-gaps-among-hcps\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Findings from NORD and Frontline Medical Communications Survey Highlight Gene Therapy Knowledge Gaps Among HCPs&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[190],"tags":[],"class_list":["post-59130","post","type-post","status-publish","format-standard","hentry","category-featured-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59130","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59130"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59130\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59130"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59130"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59130"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}