The I-DSD/I-CAH/I-TS Registry is a central resource for supporting projects in the fields of DSD/CAH/TS. The registry supports both primary and secondary research. Below is a list of completed studies and the outputs from studies can be found here .
Title [Study ID 202006_ALH] Quality assessment of the I-DSD and I-CAH Registries PI Angela Lucas-Herald Institution University of Glasgow Co-Is Craig McMillan, Jillian Bryce, Salma Ali, Martin McMillan, S. Faisal Ahmed, Glasgow Approved June 2020 Status Complete Outputs Lucas-Herald et al, Horm Res Paed 2023
Title Cardiometabolic Morbidity In Adults With 21-Hydroxylase Deficiency CAH [Study ID 201911_BR]PI Beatrice Righi Institution University of Bologna Co-Is Faisal Ahmed, Salma Ali, Glasgow; Richard Ross, Sheffield; Richard Auchus, Ann-Arbor Approved Jan 2020 Status complete Outputs Righi et al, Endocrine 2023 Raw data available
____________________________________________________________________________________________________ Title Testosterone replacement therapy in boys and young men in the I-DSD Registry [Study ID 201902_MS]PI Marianna Stancampiano Institution University of Milan Approved Feb 2019 Status complete Outputs Stancampiano et al, Sexual Development 2021 Raw data available
Title Long term outcome of 46, XY Leydig Cell Hypoplasia (LCH) cases [Study ID 201901_AB]PI Alessandra Boncompagni Institution University of Modena Approved Jan 2019 Status complete Outputs Manuscript in preparation Raw data available
Title Cardiovascular pathology in patients with 45,X/46,XY (or variant) karyotypes. [Study ID 201802_KD]PI Katja DeGroote Institution UZ Ghent Approved Feb 2018 Status complete Outputs ESPE 2018 Raw data available
Title Growth and pubertal course in 46,XY SGA boys born with atypical genitalia of unknown origin [Study ID 201710_LT]PI Lloyd Tack Institution UZ Ghent Approved Oct 2017 Status complete Outputs Tack et al, Clin Endo 2022 Raw data available
Title International practice of corticosteroid replacement therapy in congenital adrenal hyperplasia – data from the I-CAH registry PI Irina Bacila Institution Sheffield Children’s NHS Foundation Trust, University of Sheffield ACTIVE Oct 2016 & restarted May 2019 Status complete Outputs Bacila et al, Eur J Endocrinol, 2021 Raw data available
Title Puberty in Females with PAIS [Study ID 201402_GGF] PI Guilherme Guaragna Filho Institution State University of Campinas Approved Sept 2017 Status complete Outputs Guaragna et al , Sexual Development , 2023Raw data available
Title Trends in gonadectomy in DSD [Study ID 201710_ALH] PI Angela Lucas-Herald Institution University of Glasgow Active Oct 2017 Status complete Outputs Lucas-Herald et al, EJE Mar 2021 Raw data available
Title Optimizing mineralocorticoid replacement in patients with CAH [Study ID 201806_JT]PI Jeremy Tomlinson Institution Oxford Approved June 2018 Status complete Outputs Pofi R et al, J Clin Endocrinol Metab , 2020 Raw data available
Title Changes in surgical practice in CAH [Study ID 201703_AS] PI Alex Springer Institution Medical University of Vienna Approved March 2017 Status complete Outputs Hebenstreit et al, Sexual Development 2021 Raw data available
Title Management of Fludrocortisone and salt therapy in 0-3 year old children with congenital adrenal hyperplasia (CAH) [Study ID 201511_HCVDG]PI Claahsen-van der Grinten Institution Radboudumc Amalia Children’s Hospital, Charite University of Berlin Approved Jan 2016 Status complete Outputs Neumann et al, EJE 186, May 2022 Raw data available
