{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T22:52:07Z","timestamp":1780527127063,"version":"3.54.1"},"reference-count":0,"publisher":"IOS Press","isbn-type":[{"value":"9781643684567","type":"print"},{"value":"9781643684574","type":"electronic"}],"license":[{"start":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T00:00:00Z","timestamp":1706140800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,1,25]]},"abstract":"<jats:p>Drug development in rare diseases is challenging due to the limited availability of subjects with the diseases and recruiting from a small patient population. The high cost and low success rate of clinical trials motivate deliberate analysis of existing clinical trials to understand status of clinical development of orphan drugs and discover new insight for new trial. In this project, we aim to develop a user centered Rare disease based Clinical Trial Knowledge Graph (RCTKG) to integrate publicly available clinical trial data with rare diseases from the Genetic and Rare Disease (GARD) program in a semantic and standardized form for public use. To better serve and represent the interests of rare disease users, user stories were defined for three types of users, patients, healthcare providers and informaticians, to guide the RCTKG design in supporting the GARD program at NCATS\/NIH and the broad clinical\/research community in rare diseases.<\/jats:p>","DOI":"10.3233\/shti230934","type":"book-chapter","created":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T10:16:35Z","timestamp":1706177795000},"source":"Crossref","is-referenced-by-count":2,"title":["User Centered Rare Disease Clinical Trial Knowledge Graph (RCTKG)"],"prefix":"10.3233","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2332-7893","authenticated-orcid":false,"given":"Jeremy Parker","family":"Yang","sequence":"first","affiliation":[{"name":"University of Wisconsin-Madison, Madison, WI, US"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3471-7790","authenticated-orcid":false,"given":"Devon","family":"Leadman","sequence":"additional","affiliation":[{"name":"Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, US"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4866-284X","authenticated-orcid":false,"given":"Richard M.","family":"Ballew","sequence":"additional","affiliation":[{"name":"Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, US"},{"name":"ICF International Inc, Rockville, MD, US"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7697-3026","authenticated-orcid":false,"given":"Eric","family":"Sid","sequence":"additional","affiliation":[{"name":"Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, US"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8033-3793","authenticated-orcid":false,"given":"Yanji","family":"Xu","sequence":"additional","affiliation":[{"name":"Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, US"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4491-8107","authenticated-orcid":false,"given":"Ewy A.","family":"Math\u00e9","sequence":"additional","affiliation":[{"name":"Division of Pre-Clinical Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Rockville, MD, US"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4858-6333","authenticated-orcid":false,"given":"Qian","family":"Zhu","sequence":"additional","affiliation":[{"name":"Division of Pre-Clinical Innovation, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Rockville, MD, US"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","MEDINFO 2023 \u2014 The Future Is Accessible"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI230934","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,1,25]],"date-time":"2024-01-25T10:16:37Z","timestamp":1706177797000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI230934"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,1,25]]},"ISBN":["9781643684567","9781643684574"],"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti230934","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"value":"0926-9630","type":"print"},{"value":"1879-8365","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,1,25]]}}}