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The establishment of a registry committee in Rassoul Akram Hospital, one of the medical centers affiliated to IUMS, was the first step to organizing the registry project's main core. The steering committee included six subgroups of required subject fields. The members are experts in developing a guideline, providing a new dataset, drawing an outline for the next steps, and structuring user-friendly software through several panel discussion meetings. The data is collected from clinical and para-clinical\/imaging findings, laboratory evaluations, and their selected treatment strategy, retrospectively and prospectively.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The purpose is to broaden our knowledge about the profile of TED; accordingly, data related to patients\u2019 demographics, thyroid gland disease (status, duration, treatments, and function tests), general medical and ocular history, along with visual\/ocular exams resulting TED status are collected and recorded in a 2- language software. The web-based software system is accessible at\n                      <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"https:\/\/orc.iums.ac.ir\">https:\/\/orc.iums.ac.ir<\/jats:ext-link>\n                      . To maintain data security, prioritized user access was defined for different members. Furthermore, diverse methods, such as employing trained staff and utilizing software validation rules, were implemented to control data quality in every step of data collection, entry, and registration. Medical records of retrospective subjects were also evaluated and entered after accuracy verification.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Iran's TED registry provides practitioners with comprehensive data on natural history and phenotype variations in clinical features and outcomes. It facilitates patient recruitment and, consequently, earlier diagnosis on a large scale which helps improve treatment and quality of life for patients.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-024-03053-9","type":"journal-article","created":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T07:02:33Z","timestamp":1707202953000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Implementation of thyroid eye disease registry in Iran: rationale and research protocol"],"prefix":"10.1186","volume":"19","author":[{"given":"Shadi","family":"Akbarian","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Abbas","family":"Sheikhtaheri","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Farid","family":"Khorrami","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hossein","family":"Ghahvechian","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nasser","family":"Karimi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0347-5549","authenticated-orcid":false,"given":"Mohsen Bahmani","family":"Kashkouli","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2024,2,6]]},"reference":[{"key":"3053_CR1","unstructured":"Liaboe CA, Clark TJ, Simmons BA, Carter K, Shriver EM. 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