{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T16:30:55Z","timestamp":1787070655901,"version":"build-2736575974"},"reference-count":95,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"1","content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"abstract":"<jats:sec>\n                    <jats:title>BACKGROUND:<\/jats:title>\n                    <jats:p>If the data elements needed for patient registries are not identified, designing and implementing them can be very challenging. Identifying and introducing a Data Set (DS) can help solve this challenge. The aim of this study was to identify and present a DS for the design and implementation of the upper limb disability registry.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>MATERIALS AND METHODS:<\/jats:title>\n                    <jats:p>This cross-sectional study was conducted in two phases. In the first phase, to identify the administrative and clinical data elements required for registry, a comprehensive study was conducted in PubMed, Web of Science, and Scopus databases. Then, the necessary data elements were extracted from the studies and a questionnaire was designed based on them. In the second phase, in order to confirm the DS, the questionnaire was distributed to 20 orthopedic, physical medicine and rehabilitation physicians and physiotherapists during a two-round Delphi. In order to analyze the data, the frequency and mean score of each data element were calculated. Data elements that received an agreement more than 75% in the first or two-round Delphi were considered for the final DS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS:<\/jats:title>\n                    <jats:p>A total of 81 data elements in five categories of \u201cdemographic data\u201d, \u201cclinical presentation\u201d, \u201cpast medical history\u201d, \u201cpsychological issues\u201d, and \u201cpharmacological and non-pharmacological treatments\u201d were extracted from the studies. Finally, 78 data elements were approved by experts as essential data elements for designing a patient registry for upper limb disabilities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSION:<\/jats:title>\n                    <jats:p>In this study, the data elements necessary for the design and implementation of the upper limb disability registry were suggested. This DS can help registry designers and health data administrators know what data needs to be included in the registry system in order to have a successful design and implementation. Moreover, this standardized DS can be effective for integrating and improving the information management of people with upper limb disabilities and used to accurately gather the upper limb disabilities data for research and policymaking purposes.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.4103\/jehp.jehp_721_22","type":"journal-article","created":{"date-parts":[[2023,4,28]],"date-time":"2023-04-28T05:17:05Z","timestamp":1682659025000},"update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":4,"title":["A data set for the design and implementation of the upper limb disability registry"],"prefix":"10.4103","volume":"12","author":[{"given":"Khadijeh","family":"Moulaei","sequence":"first","affiliation":[{"name":"Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abbas","family":"Sheikhtaheri","sequence":"additional","affiliation":[{"name":"Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ali A.","family":"Haghdoost","sequence":"additional","affiliation":[{"name":"HIV\/STI Surveillance Research Center and WHO Collaborating Center for HIV Surveillance, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mansour S.","family":"Nezhadd","sequence":"additional","affiliation":[{"name":"Department of Physical Therapy, Faculty of Allied Medicine, Kerman University of Medical Sciences, Kerman, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kambiz","family":"Bahaadinbeigy","sequence":"additional","affiliation":[{"name":"Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2023,4]]},"reference":[{"key":"R1-20240829","first-page":"141","article-title":"A systematic review of self-reported outcome measures assessing disability following hand and upper extremity conditions in Persian population","volume":"9","author":"Shafiee","year":"2021","journal-title":"Arch Bone Jt Surg"},{"key":"R2-20240829","doi-asserted-by":"crossref","first-page":"945","DOI":"10.3109\/09638288.2015.1068383","article-title":"Assessing the impact of upper limb disability following stroke: A qualitative enquiry using internet-based personal accounts of stroke 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