The I-DSD/I-CAH Registry is a central resource in research studies in DSD and CAH. The registry supports both primary and secondary research. Below is a list of active studies. Output from completed studies can be found here.
Active studies
| Title | Long term outcome of 46, XY Leydig Cell Hypoplasia (LCH) cases |
| PI | Boncompagni |
| Institution | University of Milan/University of Glasgow |
| ACTIVE | Jan 2019 |
| Outputs |
| Title | SF1 next |
| PI | Sommer |
| Institution | University of Bern |
| ACTIVE | Dec 2018 |
| Outputs |
| Title | Defining the dose, type and timing of glucocorticoid treatment in children and adults with Congenital Adrenal Hyperplasia (CAH) |
| PI | Bacila |
| Institution | University of Sheffield |
| ACTIVE | Jan 2019 (continuation) |
| Outputs |
| Title | Adverse Events in Congenital Adrenal Hyperplasia (CAH) |
| PI | Ali |
| Institution | University of Glasgow |
| ACTIVE | Aug 2018 |
| Outputs |
| Title | Optimizing mineralocorticoid replacement in patients with CAH |
| PI | Tomlinson |
| Institution | Oxford |
| ACTIVE | June 2018 |
| Outputs |
| Title | Cardiovascular pathology in patients with 45,X/46,XY (or variant) karyotypes. |
| PI | DeGroote |
| Institution | UZ Ghent |
| ACTIVE | Feb 2018 |
| Outputs |
| Title | Growth and pubertal course in 46,XY SGA boys born with atypical genitalia of unknown origin |
| PI | Tack |
| Institution | UZ Ghent |
| ACTIVE | Oct 2017 |
| Outputs |
| Title | Trends in gonadectomy in DSD |
| PI | Lucas-Herald |
| Institution | University of Glasgow |
| ACTIVE | Oct 2017 |
| Outputs | Oral at I-DSD/CAH user group meeting, Athens Sept 2018 |
| Title | Puberty in Females with PAIS |
| PI | Guaragna Filho |
| Institution | State University of Campinas |
| ACTIVE | Sept 2017 |
| Outputs | Oral at I-DSD/CAH user group meeting, Athens Sept 2018 |
| Title | Outcome in 46,XY DS boys |
| PI | Lucas-Herald |
| Institution | University of Glasgow |
| ACTIVE | June 2017 |
| Outputs | Poster at ESPE 2017, Oral at I-DSD 2017 |
| Title | Changes in surgical practice in CAH |
| PI | Springer |
| Institution | Medical University of Vienna |
| ACTIVE | March 2017 |
| Outputs | Oral at DSDnet, Lubeck, Feb 2018 |
| Title | Identification of co-regulators of the androgen receptor leading to AIS type II |
| PI | Hornig |
| Institution | Christian-Albrechts-University Kiel & University Hosp Schleswig-Holstein, Campus Kiel |
| ACTIVE | Oct 2016 |
| Outputs | Oral at I-DSD/CAH user group meeting, Athens Sept 2018. Publications in J Clin Endocrinol Metab. 2016 and PLoS One. 2016 |
| Title | Defining the dose, type and timing of glucocorticoid treatment in children and adults with Congenital Adrenal Hyperplasia (CAH) |
| PI | Krone |
| Institution | Sheffield Children’s NHS Foundation Trust, University of Sheffield |
| ACTIVE | Oct 2016 |
| Outputs | Poster at ESPE 2017 |
| Title | A Web-Based Platform For Patient Reported Outcome Research In CAH (PRO-CAH) |
| PI | Ali |
| Institution | University of Glasgow |
| ACTIVE | June 2016 |
| Outputs | Oral at I-DSD/CAH user group meeting, Athens Sept 2018 |
| Title | Management of Fludrocortisone and salt therapy in 0-3 year old children with congenital adrenal hyperplasia (CAH) |
| PI | Claahsen-van der Grinten |
| Institution | Radboudumc Amalia Children’s Hospital, Charite University of Berlin |
| ACTIVE | Jan 2016 |
| Outputs | Poster at ESPE 2017, Oral at I-DSD 2017 Oral at I-DSD/CAH user group meeting, Athens Sept 2018 |
