Ongoing Studies

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 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 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