Studies

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 currently active studies. Links for list of Completed studies and outputs from studies.

TitlePreditors of surgical outcome in boys with hypospadias [Study ID 202112_ALH]
PIAngela Lucas-Herald
InstitutionUniversity of Glasgow
Co-IsS. Faisal Ahmed, Kathryn Scougall, Stuart O’Toole, Glasgow
ApprovedDecember 21
Recruitingopen
TitleBlood pressure status and determinants in Congenital Adrenal Hyperplasia (CAH) [Study ID 202107_NL]
PINeil Lawrence
InstitutionUniversity of Sheffield, Sheffield Children’s Hospital
Co-IsNils Krone, Eleni Daniel, Irina Bacila, Sheffield; Jeremy Tomlinson, Oxford
ApprovedJuly 21
Recruitingopen
TitleAssessment of bone age in individuals with sex chromosomal mosaicism [Study ID 202106_MC]
PIMartine Cools
InstitutionUZ Ghent
Co-IsJessica Bosmans, Ghent
ApprovedJune 21
Recruitingopen
Title46,XY Gonadal dysgenesis; diagnosis and long-term outcome [Study ID 202105_AT]
PIAjay Thankamony
InstitutionAddenbrookes Hospital, Cambridge
Co-IsRieko Tadokoro-Cuccaro, Ieuan Hughes, Cambridge; Liz Hook, Andréa T. Maciel Guerra, Gil Guerra Junior, Juliana Gabriel Ribeiro de Andrade, Berenice Bilharinho de Mendonça, Sao Paulo; Angela Lucas-Herald, Glasgow; Sabine Hannema, Amsterdam; Martine Cools, Ghent; Anders Juul, Copenhagen
ApprovedMay 21
Recruitingopen
TitleThe protective mechanisms in untreated CAH – The CAH-PROTECT study [Study ID 202105_HC]
PIHedi Claahsen
InstitutionRadboud MC, Nijmegen
Co-IsBas Adriaansen, Teun v Herwaarden, Fred Sweep, Paul Span
ApprovedMay 21
Recruitingopen
TitleGrowth characteristics of patients with 21-OHD classic CAH in the I-CAH registry [Study ID 202102_MF]
PIMallory Farrar
InstitutionNeurocrine Biosciences
Co-IsFederico Baronio, Bologna; Walter Bonfig, Munich; Hedi Claahsen-van der Grinten, Nijmegen; Nils Krone, Sheffield, Faisal Ahmed, Glasgow
ApprovedFeb 21
Recruitingopen
TitleThe Management & Consequences Of Gynaecomastia In Partial Androgen Insensitivity Syndrome [Study ID 202008_SP]
PISupitcha Patjamontri
InstitutionUniversity of Glasgow
Co-IsS. Faisal Ahmed, Angela Lucas-Herald, Glasgow;
Anders Juul, Copenhagen; Sumudu Nimali Seneviratne, Colombo; Paul Hoffman, Auckland; Olaf Hiort, Lübeck
ApprovedAug 2020
Recruitingopen
TitleIdentification of co-regulators of the androgen receptor leading to AIS type II [Study ID 202008_NH]
PINadine Hornig
InstitutionUniversity of Kiel
Co-IsPaul-Martin Holterhus, Kiel
ApprovedAug 2020
Recruitingopen
TitleSerum Anti-Müllerian Hormone In The Prediction Of Response To hCG Stimulation In Children With PAIS: an I-DSD Registry Cohort Study [Study ID 202008_ALH]
PIAngela Lucas-Herald
InstitutionUniversity of Glasgow
Co-IsFaisal Ahmed, Glasgow
ApprovedAug 2020
Recruitingopen
TitleQuality assessment of the I-DSD and I-CAH Registries [Study ID 202006_ALH]
PIAngela Lucas-Herald
InstitutionUniversity of Glasgow
Co-IsCraig McMillan, Jillian Bryce, Salma Ali, Martin McMillan, S. Faisal Ahmed, Glasgow
ApprovedJune 2020
TitleGlobal approach to monitoring Congenital Adrenal Hyperplasia (CAH) in children [Study ID 202005_IB]
PINeil Lawrence
InstitutionUniversity of Sheffield
Co-IsIrina Bacila, Nils Krone, Sheffield
ApprovedMay 2020
Recruitingopen
TitleGonadal outcome in 17beta-HSD deficiency and 5alpha-reductase deficiency (GOBHAR study) [Study ID 202001_SH]
PISabine Hannema
InstitutionErasmus MC
Co-Is
ApprovedJan 2020
Recruitingopen
TitleSF1 next [Study ID 201810_GS]
PIGrit Sommer
InstitutionUniversity of Bern
Co-IsChrista Flueck, Bern
ApprovedDec 2018
Recruitingopen
TitleClinical care and outcomes in rare forms of congenital adrenal hyperplasia: analysis of data available within the International-CAH Registry [Study ID 201909_IB]
PIIrina Bacila
InstitutionUniversity of Sheffield
Co-IsNils Krone, Sheffield
ApprovedSept 2019
Recruitingopen
TitleAdverse Events in Children with Congenital Adrenal Hyperplasia (CAH) [Study ID 201808_SA]
PISalma Ali
InstitutionUniversity of Glasgow
Co-IsRichard Ross, Eleni Daniel, Maulee Arambewela, Sheffield
ApprovedAug 2018
Recruitingopen
OutputsAli et al J Clin Endocrinol Metab 2021