The I-DSD/I-CAH/I-TS registry is approved in the UK as a research database that archives non-personally identifiable information collected as part of routine clinical practice. The database operates an Opt-In policy for consent for patients whose details are included in the Registry. A fresh application for ethics and data governance approvals in the UK occurs every 5 years and the Registry was last approved in 2019 when the information sheets and consent forms were also revised. Patient information sheets and consent forms in several languages that are based on the UK ethics approved paperwork are provided below as samples. Local approval may be required so please consult local institutions. The Registry recommends that all local information sheets and consent forms should be reviewed every 5 years as a minimum. Many centres use the I-DSD information sheets to obtain consent for DSD and CAH. However, for some languages CAH specific information sheets are also available. If you have any queries about these information sheets or would like to develop information sheets in another language, please contact us.
| Language | City | Centre | Date of last revision | PIS Adult | PIS Child | Consent form |
| Arabic | Glasgow | Royal Hospital for Children | 23/02/2017 |  | | |
| Arabic | Cairo | Cairo National Research Centre | 17/12/2013 | | ||
| Arabic | Casablanca | Hopital D’ Enfant Universitaire Abderrahim Harouchi | 22/07/2014 | | ||
| Bahasa | Semarang | Diponegoro University, Semarang, Indonesia | 02/03/2023 | | | |
| Bulgarian | Glasgow | Royal Hospital for Children | 24/02/2016 | | | |
| Chinese | Changchun | First Hospital of Jilin University, | 22/07/2014 | | ||
| Dutch | Ghent | UZ-Ghent | 19/11/2012 | | ||
| Dutch | Nijmegen | Radboud-MC | 09/06/2015 | | | AdultChild |
| English (I-DSD) | Glasgow | Royal Hospital for Children | 06/09/2019 | | | |
| English (I-CAH) | Glasgow | Royal Hospital For Children | 06/09/2019 | | | |
| English (I-TS) | Glasgow | Royal Hospital for Children | 11/01/2021 | | | |
| French | Brussels | Hopital Universitaire des Enfants Reine Fabiola | 23/06/2020 | | | |
| German | Lubeck | UNIVERSITÄTSKLINIKUM Schleswig-Holstein | 22/07/2014 | | | |
| German (I-DSD) | Bern | Universitäts Kinderklinik Bern | 19/04/2021 | Parent Patient | Child Adolescent | Child Adult |
| Hebrew (I-DSD | Petah Tiqvah | Schneider Children’s Medical Center | 22/09/2021 | | AdultChild | |
| Hebrew (I-CAH) | Petah Tiqvah | Schneider Children’s Medical Center | 22/09/2021 | | AdultChild | |
| Italian | Pisa | Azienda Ospedaliera Universitaria Pisana | 27/08/2013 | | | |
| Lithuanian | Kaunas | Lithuanian University of Health Sciences | 13/04/2016 | | | |
| Polish | Poznan | Poznan University of Medical Sciences | 10/09/2013 | | | |
| Portuguese | Campinas | Cidade Universitaria Campinas | 22/07/2014 | | ||
| Portuguese | Glasgow | Royal Hospital for Children | 13/08/2015 | | | |
| Romanian | Glasgow | Royal Hospital for Children | 15/02/2015 | | | |
| Russian | Glasgow | Royal Hospital for Children | 22/08/2014 | | | |
| Spanish | Buenos Aires | Hospital de Niños R. Gutiérrez | 20/08/2020 | | 7-13 13+ | |
| Spanish | Barcelona | Vall d’Hebron Research Institute | 04/11/2016 | | | |
| Swedish | Stockholm | Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm | 27/01/2021 | Parent Patient | | Parents Patient |
| Turkish | Marmara/Izmir | Marmara University, Istanbul | 16/03/2023 | | | |
| Urkrainian | Kyiv | Ukrainian Center of Endocrine Surgery, | 20/09/2017 | | | |
If you have any queries about the information sheets then please contact: registry@i-dsd.org
I-DSD 