Studies

Below is a list of currently active studies. Click on the study title to get summary details of the study.

Completed studies

Title
Study ID 202311_SH
Hormonal replacement therapy in patients with hypogonadotropic hypogonadism – what should be best practice?
PISasha Howard
InstitutionQueen Mary University of London
Co-IsMehul Dattani, Gary Butler, Tim Cole, Channa Jayasena, London; Nils Krone, Sheffield; Senthil Senniappan, Liverpool; Claire Wood, Newcastle; Toby Candler, Bristol; Julia Rohayem, St. Gallen; Anna Nordenstrom, Stockholm; Sabine Heger, Hannover; Marco Bonomi, Milan.
ApprovedNov 2023
StatusPreparing to Launch
_______________________________________________________________________________________
Title
Study ID 202305_MEB
Gender identity and gender contentedness in individuals with XY DSD raised as girls
PIGil Guerra-Junior/Mayra El Beck
InstitutionState University of Campinas (UNICAMP), Brazil
Co-IsMayra de Souza El Beck, Brazil; Angela Lucas-Herald, UK; Guilherme Guaragna-Filho, Brazil; Zofia Kolesinska, Poland
ApprovedMay 2023
StatusRecruiting
_______________________________________________________________________________________
Title
Study ID 202305_MRS
Congenital micropenis in DSD
PIMarianna Stancampiano
InstitutionSan Raffaele Hospital, Milan
Co-IsFaisal Ahmed, Glasgow, Angela Lucas-Herald, Glasgow, Martine Cools, Ghent, Sukran Poyrazoglu, Istanbul, Olaf Hiort, Luebeck, Anders Juul, Copenhagen
ApprovedMay 2023
StatusPreparing to launch
_______________________________________________________________________________________
Title
Study ID 202305 NL
Adiposity rebound in patients within I-CAH
PINeil Lawrence
InstitutionUniversity of Sheffield
Co-IsNils Krone, Irina Bacila, Chamila Lakmini Balagamage, Sheffield
ApprovedMay 2023
StatusRecruiting
_______________________________________________________________________________________
Title
Study ID 202305_MS
Gonadal function and outcome in 46, XX testicular/ovotesticular DSD
PIMargherita Sepich
InstitutionUniversity of Pisa
Co-IsFaisal Ahmed, Glasgow, Silvano Bertelloni, Pisa, Nina Tyutyusheva, Pisa, Angela Lucas-Herald, Glasgow, Inas Mazen, Cairo, Martine Cools, Ghent, Junfen Fu, Zhejiang, Şükran Poyrazoğlu, Istanbul, Olaf Hiort, Luebeck.
ApprovedMay 2023
StatusRecruiting
_______________________________________________________________________________________
Title
Study ID 202212_ALH
Blood pressure in males with 46,XY DSD conditions
PIAngela Lucas-Herald
InstitutionUniversity of Glasgow
Co-IsFaisal Ahmed, Glasgow; Hedi Claahsen, Radboud; Martine Cools, Ghent; Feyza Darendileler, Istanbul; Guilherme Guaragna Filho, Porto Alegre; Sabine Hannema, Amsterdam; Olaf Hiort, Luebeck; Anders Juul, Copenhagen; Tina Leunbach, Aarhus; Anna Nordenstrom, Stockholm; Marianna Stancampiano, Milan
ApprovedDec 2022
StatusRecruiting
_______________________________________________________________________________________

TitleStudy ID 202212_EW
Trends in glucocorticoid prescribing practice in CAH over the last 5 years (2017-2022)
PIEmma Webb
Institution Jenny Lind Children’s Hospital, Norwich
Co-IsAnna Nordenström, Stockholm; Hedi L. Claahsen – van der Grinten, Nijmegen; Christa Flueck, Bern, Switzerland; Nicole Reisch, Munich; Jan Idkowiak, Birmingham
ApprovedDec 2022
StatusPreparing to launch
________________________________________________________________________________________
TitleStudy ID 201808_SA
Adverse Events in Children with Congenital Adrenal Hyperplasia (CAH)
PISalma Ali
InstitutionUniversity of Glasgow
Co-IsXanthippi Tseretopoulou, Jillian Bryce, Faisal Ahmed and the Participating centers
ApprovedAug 2018
StatusCollecting data for Round 2 (2019-2022) (continuous for benchmarking)
OutputsAli et al J Clin Endocrinol Metab 2021
________________________________________________________________________________________
TitleStudy ID 202206_MO
A prospective assessment of the practice of gonadectomy in people with a Difference of Sex Development at  specialist centres  
PIMichele O’Connell
InstitutionThe Royal Children’s Hospital Melbourne
Co-IsAngela Lucas-Herald, S. Faisal Ahmed, Glasgow, Margarett Shnorhavorian, Seattle, Justin Davies, Southampton
ApprovedJune 2022
StatusLaunched Dec-22 (monthly surveillance)
________________________________________________________________________________________
TitleStudy ID 202203_NK
Analysis of real-world data on the care provision of children with congenital adrenal hyperplasia in the United Kingdom
PINils Krone
InstitutionSheffield Children’s Hospital
Co-IsIrina 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
ApprovedMarch 2022
StatusRecruiting
________________________________________________________________________________________
TitleStudy ID 202203_JD
The clinical management of 21-hydroxylase deficiency CAH in early infancy
PIJustin Davies
InstitutionSouthampton Children’s Hospital
Co-IsDavid 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
ApprovedMarch 2022
StatusCollecting data
________________________________________________________________________________________
TitleStudy ID 202112_HT
Prevalence, patterns, and characteristics of hypertension diagnosis and management in patients included in the International Turner Syndrome registry
PIHelen Turner
InstitutionChurchill Hospital, Oxford
Co-IsM D Shani, A Dilrukshi, C G K Amiyangoda. Churchill hospital, Oxford. KJ Beck, University of Oxford
ApprovedDecember 21
StatusCollecting data
________________________________________________________________________________________
TitleStudy 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
PIClaudia Boettcher
InstitutionInselspital, University Children’s Hospital, Bern
Co-IsChrista Flueck, Bern
ApprovedDecember 21
StatusCollecting data
________________________________________________________________________________________
TitleStudy ID 202112_JF
Clinical and genetic characteristics of SRY-negative 46,XX testicular/ovotesticular DSD: results from an international registry-based study
PIJunfen Fu
InstitutionZhejiang University School of Medicine, China
Co-IsHao Yang, Zhejiang
ApprovedDecember 21
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 202107_NL
Blood pressure status and determinants in Congenital Adrenal Hyperplasia (CAH)
PINeil Lawrence
InstitutionUniversity of Sheffield, Sheffield Children’s Hospital
Co-IsNils Krone, Eleni Daniel, Irina Bacila, Sheffield; Jeremy Tomlinson, Oxford
ApprovedJuly 21
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 202106_MC
Assessment of bone age in individuals with sex chromosomal mosaicism
PIMartine Cools
InstitutionUZ Ghent
Co-IsJessica Bosmans, Ghent
ApprovedJune 21
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 202105_AT
46,XY Gonadal dysgenesis; diagnosis and long-term outcome
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
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 202105_HC
The protective mechanisms in untreated CAH – The CAH-PROTECT study
PIHedi Claahsen
InstitutionRadboud MC, Nijmegen
Co-IsBas Adriaansen, Teun v Herwaarden, Fred Sweep, Paul Span
ApprovedMay 21
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 202008_NH
Identification of co-regulators of the androgen receptor leading to AIS type II
PINadine Hornig
InstitutionUniversity of Kiel
Co-IsPaul-Martin Holterhus, Kiel
ApprovedAug 2020
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 202001_SH
Gonadal outcome in 17beta-HSD deficiency and 5alpha-reductase deficiency (GOBHAR study)
PISabine Hannema
InstitutionAmsterdam UMC
Co-Is
ApprovedJan 2020
StatusIn analysis
________________________________________________________________________________________
TitleStudy ID 201810_GS
SF1 next
PIGrit Sommer
InstitutionUniversity of Bern
Co-IsChrista Flueck, Bern
ApprovedDec 2018
StatusIn analysis
_____________________________________________________________________

Last Revised: