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 |
Testosterone replacement therapy in boys and young men in the I-DSD Registry |
| PI |
Stancampiano |
| Institution |
University of Milan/University of Glasgow |
| ACTIVE |
Feb 2019 |
| Outputs |
|
| Title |
Long term outcome of 46, XY Leydig Cell Hypoplasia (LCH) cases |
| PI |
Boncompagni |
| Institution |
University of Modena/University of Glasgow |
| ACTIVE |
Jan 2019 |
| Outputs |
|
| Title |
SF1 next |
| PI |
Sommer |
| Institution |
University of Bern |
| ACTIVE |
Dec 2018 |
| Outputs |
|
| Title |
Clinical care and outcomes in rare forms of congenital adrenal hyperplasia: analysis of data available within the International-CAH Registry |
| PI |
Bacila |
| Institution |
University of Sheffield |
| ACTIVE |
Sept 2019 |
| 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 |
Defining new genetic etiologies for syndromic DSD |
| PI |
McElreavey |
| Institution |
Institut Pasteur |
| ACTIVE |
June 2017 |
| Outputs |
Oral at I-DSD/CAH user group meeting, Athens Sept 2018 |
| Title |
Outcome in 46,XY DSD 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 & extended Jan 2019 |
| 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 |
Like this:
Like Loading...
I-TS 