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.
| Title | [Study ID 202206_MO] A prospective assessment of the practice of gonadectomy in people with a Difference of Sex Development at specialist centres |
| PI | Michele O’Connell |
| Institution | The Royal Children’s Hospital Melbourne |
| Co-Is | Angela Lucas-Herald, S. Faisal Ahmed, Glasgow, Margarett Shnorhavorian, Seattle, Justin Davies, Southampton |
| Approved | June 2022 |
| Recruiting | open |
| Title | [Study ID 202203_NK] Analysis of real-world data on the care provision of children with congenital adrenal hyperplasia in the United Kingdom |
| PI | Nils Krone |
| Institution | Sheffield Children’s Hospital |
| Co-Is | Irina Bacila, Neil Lawrence, Sheffield, S. Faisal Ahmed, Glasgow, Nadia Amin, Leeds, Joanne Blair, Liverpool, Timothy Cheetham, Newcastle, Elizabeth Crowne, Bristol, Mehul Dattani, Evelien Gevers, London, Justin H Davies, Southampton, Ruth Krone, Birmingham, Mars Skae, Manchester, Harriet Miles, Edinburgh, Anuja Natarajan, Doncaster, Tabitha Randell, Nottingham, Fiona Ryan, Oxford, Ajay Thankamony, Cambridge |
| Approved | March 2022 |
| Recruiting | open |
| Title | [Study ID 202203_JD] The clinical management of 21-hydroxylase deficiency CAH in early infancy |
| PI | Justin Davies |
| Institution | Southampton Children’s Hospital |
| Co-Is | David Lim, Southampton, Michele O’Connell, Melbourne, Faisal Ahmed, Salma Ali , Jillian Bryce, Glasgow, Navoda Atapattu, Colombo, Marion Rapp, Holstein, David Sandberg, Ann Arbor, Margarett Shnorhavorian, Seattle, Nils Krone, Sheffield |
| Approved | March 2022 |
| Recruiting | open |
| Title | [Study ID 202112_HT] Prevalence, patterns, and characteristics of hypertension diagnosis and management in patients included in the International Turner Syndrome registry |
| PI | Helen Turner |
| Institution | Churchill Hospital, Oxford |
| Co-Is | M D Shani, A Dilrukshi, C G K Amiyangoda. Churchill hospital, Oxford. KJ Beck, University of Oxford |
| Approved | December 21 |
| Recruiting | open |
| Title | [Study ID 202112_CB] Oral Contraceptives In Female Adolescents With 21-Hydroxylase Deficiency (CAH) To Optimize Treatment With Respect To Androgen Excess: Effects On The Metabolome? A Prospective Observational Study |
| PI | Claudia Boettcher |
| Institution | Inselspital, University Children’s Hospital, Bern |
| Co-Is | Christa Flueck, Bern |
| Approved | December 21 |
| Recruiting | open |
| Title | [Study ID 202112_JF] Clinical and genetic characteristics of SRY-negative 46,XX testicular/ovotesticular DSD: results from an international registry-based study |
| PI | Junfen Fu |
| Institution | Zhejiang University School of Medicine, China |
| Co-Is | Hao Yang, Zhejiang |
| Approved | December 21 |
| Recruiting | open |
| Title | [Study ID 202112_HC] The earlysTART study – The association between hormonal control during infancy and early childhood and testicular adrenal rest tumour (TART) development in males with CAH |
| PI | Hedi Claahsen |
| Institution | Radboud University Medical Center |
| Co-Is | Mariska Schröder, Paul Span, Fred Sweep, Teun van Herwaarden, Bas Adriaansen, Nijmegen |
| Approved | December 21 |
| Recruiting | open |
| Title | [Study ID 202112_ALH] Predictors of surgical outcome in boys with hypospadias |
| PI | Angela Lucas-Herald |
| Institution | University of Glasgow |
| Co-Is | S. Faisal Ahmed, Kathryn Scougall, Stuart O’Toole, Glasgow |
| Approved | December 21 |
| Recruiting | open |
| Title | [Study ID 202107_NL] Blood pressure status and determinants in Congenital Adrenal Hyperplasia (CAH) |
| PI | Neil Lawrence |
| Institution | University of Sheffield, Sheffield Children’s Hospital |
| Co-Is | Nils Krone, Eleni Daniel, Irina Bacila, Sheffield; Jeremy Tomlinson, Oxford |
| Approved | July 21 |
| Recruiting | open |
| Title | [Study ID 202106_MC] Assessment of bone age in individuals with sex chromosomal mosaicism |
| PI | Martine Cools |
| Institution | UZ Ghent |
| Co-Is | Jessica Bosmans, Ghent |
| Approved | June 21 |
| Recruiting | open |
| Title | [Study ID 202105_AT] 46,XY Gonadal dysgenesis; diagnosis and long-term outcome |
| PI | Ajay Thankamony |
| Institution | Addenbrookes Hospital, Cambridge |
| Co-Is | Rieko 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 |
| Approved | May 21 |
| Recruiting | open |
| Title | [Study ID 202105_HC] The protective mechanisms in untreated CAH – The CAH-PROTECT study |
| PI | Hedi Claahsen |
| Institution | Radboud MC, Nijmegen |
| Co-Is | Bas Adriaansen, Teun v Herwaarden, Fred Sweep, Paul Span |
| Approved | May 21 |
| Recruiting | open |
| Title | [Study ID 202102_MF] Growth characteristics of patients with 21-OHD classic CAH in the I-CAH registry |
| PI | Mallory Farrar |
| Institution | Neurocrine Biosciences |
| Co-Is | Federico Baronio, Bologna; Walter Bonfig, Munich; Hedi Claahsen-van der Grinten, Nijmegen; Nils Krone, Sheffield, Faisal Ahmed, Glasgow |
| Approved | Feb 21 |
| Recruiting | open |
| Title | [Study ID 202008_SP] The Management & Consequences Of Gynaecomastia In Partial Androgen Insensitivity Syndrome |
| PI | Supitcha Patjamontri |
| Institution | University of Glasgow |
| Co-Is | S. Faisal Ahmed, Angela Lucas-Herald, Glasgow; Anders Juul, Copenhagen; Sumudu Nimali Seneviratne, Colombo; Paul Hoffman, Auckland; Olaf Hiort, Lübeck |
| Approved | Aug 2020 |
| Recruiting | open |
| Title | [Study ID 202008_NH] Identification of co-regulators of the androgen receptor leading to AIS type II |
| PI | Nadine Hornig |
| Institution | University of Kiel |
| Co-Is | Paul-Martin Holterhus, Kiel |
| Approved | Aug 2020 |
| Recruiting | open |
| Title | [Study ID 202008_ALH] Serum Anti-Müllerian Hormone In The Prediction Of Response To hCG Stimulation In Children With PAIS: an I-DSD Registry Cohort Study |
| PI | Angela Lucas-Herald |
| Institution | University of Glasgow |
| Co-Is | Faisal Ahmed, Glasgow |
| Approved | Aug 2020 |
| Recruiting | open |
| 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 |
| Title | [Study ID 202005_IB] Global approach to monitoring Congenital Adrenal Hyperplasia (CAH) in children |
| PI | Neil Lawrence |
| Institution | University of Sheffield |
| Co-Is | Irina Bacila, Nils Krone, Sheffield |
| Approved | May 2020 |
| Recruiting | open |
| Title | [Study ID 202001_SH] Gonadal outcome in 17beta-HSD deficiency and 5alpha-reductase deficiency (GOBHAR study) |
| PI | Sabine Hannema |
| Institution | Erasmus MC |
| Co-Is | |
| Approved | Jan 2020 |
| Recruiting | open |
| Title | [Study ID 201810_GS] SF1 next |
| PI | Grit Sommer |
| Institution | University of Bern |
| Co-Is | Christa Flueck, Bern |
| Approved | Dec 2018 |
| Recruiting | open |
| Title | [Study ID 201909_IB] Clinical care and outcomes in rare forms of congenital adrenal hyperplasia: analysis of data available within the International-CAH Registry |
| PI | Irina Bacila |
| Institution | University of Sheffield |
| Co-Is | Nils Krone, Sheffield |
| Approved | Sept 2019 |
| Recruiting | open |
| Title | [Study ID 201808_SA] Adverse Events in Children with Congenital Adrenal Hyperplasia (CAH) |
| PI | Salma Ali |
| Institution | University of Glasgow |
| Co-Is | Richard Ross, Eleni Daniel, Maulee Arambewela, Sheffield |
| Approved | Aug 2018 |
| Recruiting | open |
| Outputs | Ali et al J Clin Endocrinol Metab 2021 |
I-DSD 