Information sheets & Consent Forms

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 revisionPIS AdultPIS Child Consent form
ArabicGlasgowRoyal Hospital for Children23/02/2017Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
ArabicCairoCairo National Research Centre17/12/2013Document, download, file, files, pdf icon
Arabic CasablancaHopital D’ Enfant Universitaire Abderrahim Harouchi22/07/2014Document, download, file, files, pdf icon
BahasaSemarangDiponegoro University, Semarang, Indonesia02/03/2023Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
BulgarianGlasgowRoyal Hospital for Children24/02/2016Document, download, file, files, pdf iconDocument, download, file, files, pdf icon
Chinese ChangchunFirst Hospital of Jilin University,22/07/2014Document, download, file, files, pdf icon
DutchGhentUZ-Ghent19/11/2012Document, download, file, files, pdf icon
Dutch NijmegenRadboud-MC09/06/2015Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf iconAdultDocument, download, file, files, pdf iconChild
English
(I-DSD)
GlasgowRoyal Hospital for Children06/09/2019Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
English
(I-CAH)
GlasgowRoyal Hospital For Children06/09/2019Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
English
(I-TS)
GlasgowRoyal Hospital for Children 11/01/2021Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
FrenchBrusselsHopital Universitaire des Enfants Reine Fabiola23/06/2020Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
GermanLubeckUNIVERSITÄTSKLINIKUM Schleswig-Holstein22/07/2014Document, download, file, files, pdf iconDocument, download, file, files, pdf icon
German
(I-DSD)
BernUniversitäts Kinderklinik Bern 19/04/2021Document, download, file, files, pdf icon
Parent
Document, download, file, files, pdf icon
Patient
Document, download, file, files, pdf icon
Child
Document, download, file, files, pdf icon
Adolescent
Document, download, file, files, pdf iconChild
Document, download, file, files, pdf icon
Adult
Hebrew
(I-DSD
Petah TiqvahSchneider Children’s Medical Center22/09/2021Document, download, file, files, pdf iconDocument, download, file, files, pdf iconAdult
Document, download, file, files, pdf iconChild
Hebrew (I-CAH)Petah TiqvahSchneider Children’s Medical Center22/09/2021Document, download, file, files, pdf iconDocument, download, file, files, pdf iconAdult
Document, download, file, files, pdf iconChild
ItalianPisaAzienda Ospedaliera Universitaria Pisana27/08/2013Document, download, file, files, pdf iconDocument, download, file, files, pdf icon
LithuanianKaunasLithuanian University of Health Sciences13/04/2016Document, download, file, files, pdf iconDocument, download, file, files, pdf icon
PolishPoznanPoznan University of Medical Sciences10/09/2013Document, download, file, files, pdf iconDocument, download, file, files, pdf icon
PortugueseCampinasCidade Universitaria Campinas22/07/2014Document, download, file, files, pdf icon
PortugueseGlasgowRoyal Hospital for Children13/08/2015Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
RomanianGlasgowRoyal Hospital for Children15/02/2015Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
RussianGlasgowRoyal Hospital for Children22/08/2014Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
Spanish Buenos AiresHospital de Niños R. Gutiérrez20/08/2020Document, download, file, files, pdf icon7-13Document, download, file, files, pdf icon
13+Document, download, file, files, pdf icon
Document, download, file, files, pdf icon
Spanish BarcelonaVall d’Hebron Research Institute04/11/2016Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
Swedish StockholmAstrid Lindgren Children’s Hospital, Karolinska University Hospital,
Stockholm
27/01/2021Document, download, file, files, pdf icon
Parent
Document, download, file, files, pdf icon
Patient
Document, download, file, files, pdf iconDocument, download, file, files, pdf icon
Parents
Document, download, file, files, pdf icon
Patient
TurkishMarmara/Izmir Marmara University, Istanbul16/03/2023Document, download, file, files, pdf iconDocument, download, file, files, pdf iconDocument, download, file, files, pdf icon
UrkrainianKyivUkrainian Center of Endocrine Surgery,20/09/2017Document, download, file, files, pdf iconDocument, download, file, files, pdf icon

If you have any queries about the information sheets then please contact: registry@i-dsd.org