{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,22]],"date-time":"2026-10-22T08:38:42Z","timestamp":1792658322921,"version":"4.5.0"},"reference-count":19,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2023,10,12]],"date-time":"2023-10-12T00:00:00Z","timestamp":1697068800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2023,10,12]],"date-time":"2023-10-12T00:00:00Z","timestamp":1697068800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100018108","name":"Turner Syndrome Global Alliance","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100018108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Inspiring New Science to Guide Healthcare in Turner Syndrome (InsighTS) Registry is a national, multicenter registry for individuals with Turner syndrome (TS) designed to collect and store validated longitudinal clinical data from a diverse cohort of patients with TS. Herein, we describe the rationale, design, and approach used to develop the InsighTS registry, as well as the demographics of the initial participants to illustrate the registry's diversity and future utility. Multiple stakeholder groups have been involved from project conceptualization through dissemination, ensuring the registry serves the priorities of the TS community. Key features of InsighTS include recruitment strategies to facilitate enrollment of participants that appropriately reflect the population of individuals with TS receiving care in the US, clarity of data ownership and sharing, and sustainability of this resource. The registry gathers clinical data on diagnosis, treatment, comorbidities, health care utilization, clinical practices, and quality of life with the goal of improving health outcomes for this population. Future directions include multiple patient\u2010centered clinical\u2010translational research projects that will use the InsighTS platform. This thorough and thoughtful planning will ensure InsighTS is a valuable and sustainable resource for the TS community for decades to come.<\/jats:p>","DOI":"10.1002\/ajmg.a.63441","type":"journal-article","created":{"date-parts":[[2023,10,12]],"date-time":"2023-10-12T22:05:13Z","timestamp":1697148313000},"page":"311-319","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Inspiring New Science to Guide Healthcare in Turner Syndrome: Rationale, design, and methods for the InsighTS Registry"],"prefix":"10.1002","volume":"194","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9653-8865","authenticated-orcid":false,"given":"Roopa","family":"Kanakatti Shankar","sequence":"first","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Division of Endocrinology Children's National Hospital  Washington District of Columbia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexandra","family":"Carl","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"eXtraOrdinary Kids Turner Syndrome Clinic Children's Hospital of Colorado  Aurora Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer R.","family":"Law","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Division of Pediatric Endocrinology, Department of Pediatrics University of North Carolina at Chapel Hill  Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vaneeta","family":"Bamba","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Division of Endocrinology, Department of Pediatrics, Children's Hospital of Philadelphia Perelman School of Medicine at the University of Pennsylvania  Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy J.","family":"Brickman","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Division of Endocrinology, Department of Pediatrics, Ann and Robert H. Lurie Children's Hospital of Chicago Northwestern University, Feinberg School of Medicine  Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siddharth K.","family":"Prakash","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Department of Internal Medicine, McGovern Medical School The University of Texas Health Science Center at Houston  Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tazim","family":"Dowlut McElroy","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Pediatric and Adolescent Gynecology Department of Surgery, Children's Mercy  Kansas City Missouri 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Turner Syndrome (InsighTS) Consortium  USA"},{"name":"University of California San Diego Rady Children's Hospital  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6450-0918","authenticated-orcid":false,"given":"Catherina T.","family":"Pinnaro","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Division of Endocrinology and Diabetes, Stead Family Department of Pediatrics University of Iowa  Iowa City Iowa USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelly","family":"Ranallo","sequence":"additional","affiliation":[{"name":"Inspiring New Science In Guiding Healthcare in Turner Syndrome (InsighTS) Consortium  USA"},{"name":"Turner Syndrome Global Alliance  Overland Park Kansas 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