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Following the successful roll\u2010out of the I\u2010DSD Registry in the 2000s, it was felt that there was a need for a registry for congenital adrenal hyperplasia\u00a0(CAH) and this was launched in 2014 as a dedicated module within the original registry. In addition to supporting and promoting research, the I\u2010CAH Registry acts as an international tool for benchmarking of clinical care and it does this through the collection of standardised data for specific projects. Surveillance of novel therapies in the field of CAH can also be achieved via global collaborations. Its robust governance ensures adherence to the international standards for rare disease registries.\u00a0Rare disease registries such as the I\u2010CAH Registry are important tools for all stakeholders involved in the care of people with CAH.<\/jats:p>","DOI":"10.1111\/cen.14961","type":"journal-article","created":{"date-parts":[[2023,8,22]],"date-time":"2023-08-22T02:53:55Z","timestamp":1692672835000},"page":"397-404","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["The I\u2010CAH Registry: A platform for international collaboration for improving knowledge and clinical care in congenital adrenal hyperplasia"],"prefix":"10.1111","volume":"101","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3608-8695","authenticated-orcid":false,"given":"Xanthippi","family":"Tseretopoulou","sequence":"first","affiliation":[{"name":"Developmental Endocrinology Research Group School of Medicine, Dentistry &amp; Nursing University of Glasgow Glasgow UK"},{"name":"Office for Rare Conditions Royal Hospital for Children &amp; Queen Elizabeth University Hospital Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jillian","family":"Bryce","sequence":"additional","affiliation":[{"name":"Office for Rare Conditions Royal Hospital for Children &amp; Queen Elizabeth University Hospital Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Minglu","family":"Chen","sequence":"additional","affiliation":[{"name":"Office for Rare Conditions Royal Hospital for Children &amp; Queen Elizabeth University Hospital Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"McMillan","sequence":"additional","affiliation":[{"name":"Developmental Endocrinology Research Group School of Medicine, Dentistry &amp; Nursing University of Glasgow Glasgow UK"},{"name":"Office for Rare Conditions Royal Hospital for Children &amp; Queen Elizabeth University Hospital Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2662-1684","authenticated-orcid":false,"given":"Angela K.","family":"Lucas\u2010Herald","sequence":"additional","affiliation":[{"name":"Developmental Endocrinology Research Group School of Medicine, Dentistry &amp; Nursing University of Glasgow Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Salma R.","family":"Ali","sequence":"additional","affiliation":[{"name":"Developmental Endocrinology Research Group School of Medicine, Dentistry &amp; Nursing University of Glasgow Glasgow UK"},{"name":"Office for Rare Conditions Royal Hospital for Children &amp; Queen Elizabeth University Hospital Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0689-5549","authenticated-orcid":false,"given":"S. F.","family":"Ahmed","sequence":"additional","affiliation":[{"name":"Developmental Endocrinology Research Group School of Medicine, Dentistry &amp; Nursing University of Glasgow Glasgow UK"},{"name":"Office for Rare Conditions Royal Hospital for Children &amp; Queen Elizabeth University Hospital Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,8,21]]},"reference":[{"key":"e_1_2_14_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2265.2006.02740.x"},{"key":"e_1_2_14_3_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2018-01862"},{"key":"e_1_2_14_4_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2018-01865"},{"key":"e_1_2_14_5_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijms20184405"},{"key":"e_1_2_14_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpurol.2006.03.004"},{"key":"e_1_2_14_7_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2010-0917"},{"key":"e_1_2_14_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/cen.12485"},{"key":"e_1_2_14_9_1","unstructured":"I\u2010DSD\/I\u2010CAH\/I\u2010TS Steering committee [Internet].https:\/\/sdmregistries.org\/steering-committee\/. 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