{"id":1658,"date":"2023-05-11T17:57:42","date_gmt":"2023-05-11T17:57:42","guid":{"rendered":"https:\/\/longcovidalliance.org\/?p=1658"},"modified":"2023-08-24T18:50:43","modified_gmt":"2023-08-24T18:50:43","slug":"how-to-include-patients-in-long-covid-research","status":"publish","type":"post","link":"https:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/","title":{"rendered":"How to include patients in Long COVID research"},"content":{"rendered":"\n

The “Promise of Patient-Led Research Integration into Clinical Registries and Research” <\/em>project moves beyond patient engagement toward a solution where patient-generated data and patient-led outcomes research become an essential component of medical research, leading to more patient-centric comparative effectiveness research (CER). Patients and patient organizations, funders, research institutions and other traditional biomedical research teams can collaboratively build the infrastructure and dynamics needed for patient-led CER. Use these scorecards by Patient-Led Research Collaborative<\/a> and Council of Medical Speciality Societies<\/a> to evaluate patient-informed LCAC research.<\/p>\n\n\n\n

See the scorecards here.<\/a><\/p>\n\n\n

\n
\"\"<\/figure><\/div>","protected":false},"excerpt":{"rendered":"

The “Promise of Patient-Led Research Integration into Clinical Registries and Research” project moves beyond patient engagement toward a solution where patient-generated data and patient-led outcomes research become an essential component of medical…<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"_themeisle_gutenberg_block_has_review":false,"footnotes":""},"categories":[153,6],"tags":[139,130],"yoast_head":"\nHow to include patients in Long COVID research - Long-COVID Alliance<\/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:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"How to include patients in Long COVID research - Long-COVID Alliance\" \/>\n<meta property=\"og:description\" content=\"The “Promise of Patient-Led Research Integration into Clinical Registries and Research” project moves beyond patient engagement toward a solution where patient-generated data and patient-led outcomes research become an essential component of medical...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/\" \/>\n<meta property=\"og:site_name\" content=\"Long-COVID Alliance\" \/>\n<meta property=\"article:published_time\" content=\"2023-05-11T17:57:42+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-08-24T18:50:43+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/longcovidalliance.org\/wp-content\/uploads\/2023\/05\/Patient-Led-Research-Scorecards.pdf\" \/>\n<meta name=\"author\" content=\"Long Covid Alliance\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Long Covid Alliance\" \/>\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:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/\",\"url\":\"https:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/\",\"name\":\"How to include patients in Long COVID research - Long-COVID Alliance\",\"isPartOf\":{\"@id\":\"https:\/\/longcovidalliance.org\/#website\"},\"datePublished\":\"2023-05-11T17:57:42+00:00\",\"dateModified\":\"2023-08-24T18:50:43+00:00\",\"author\":{\"@id\":\"https:\/\/longcovidalliance.org\/#\/schema\/person\/e1c628b45ce2eb41dbb875e974860e1b\"},\"breadcrumb\":{\"@id\":\"https:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/longcovidalliance.org\/how-to-include-patients-in-long-covid-research\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/longcovidalliance.org\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"How to include patients in Long COVID research\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/longcovidalliance.org\/#website\",\"url\":\"https:\/\/longcovidalliance.org\/\",\"name\":\"Long-COVID Alliance\",\"description\":\"Research. 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