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Clinical European study on the outcome of surgical and hormonal therapy and psychological intervention in disorders of sex development (DSD)

Objective

Disorders of sex development (DSD) are a conglomerate of rare diseases with an estimated incidence of 1: 4500. The causes of DSD are mainly disorders with gonadal dysgenesis, decreased androgen synthesis or function in XY males or disorders with elevated androgen production in XX females. Decision on sex of rearing is difficult in some cases as the prenatal androgen imbalances result in ambiguous genitalia at birth and furthermore they are likely to influence psychosexual development. Genital constructive surgery is needed in most cases. Lifelong cortisone replacement is needed in DSD due to defects of cortisone synthesis. Sex hormone substitution is indicated in many cases of DSD in puberty and adult life. Decision of sex of rearing, genital surgery and hormone therapies have a life-long impact on the affected individuals, which become evident mainly after puberty. In many cases psychological counselling is advised. Interpretation of previous outcome studies of DSD is hampered by small patient numbers and conglomerates of diagnoses and therapies. The study DSD-Life investigates and compares the long-term outcome of different off-label treatments in adequate numbers of adolescents and adults with different known genetic entities of DSD to develop recommendations for treatment of DSD. To reach this aim, the influences and interrelations of sex assignment, genital surgery, hormone therapy, metabolism, fertility, psychological intervention but also cultural influences and patients’ and parents’ views on psychosocial adaption, health related quality of life and psychological well-being and will be investigated. The long-term impact of the study will be improvement of care and subsequently higher quality of life with better integration and participation of individuals with DSD in the society.

Call for proposal

FP7-HEALTH-2012-INNOVATION-1
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Funding Scheme

CP-FP - Small or medium-scale focused research project

Coordinator

CHARITE - UNIVERSITAETSMEDIZIN BERLIN
Address
Chariteplatz 1
10117 Berlin
Germany
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 916 820
Administrative Contact
Eveline Fräßdorf (Ms.)

Participants (17)

UNIVERSITAET zu LUEBECK
Germany
EU contribution
€ 236 100
Address
Ratzeburger Allee 160
23562 Lubeck
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Gabriele Kipke (Mrs.)
Westfälische Wilhelms-Universität Münster
Germany
EU contribution
€ 36 600
Address
Schlossplatz 2
48149 Muenster
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Ingo Niendorf
STICHTING VU
Netherlands
EU contribution
€ 221 880
Address
De Boelelaan 1105
1081 HV Amsterdam
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Johannes Klarenbeek (Mr.)
STICHTING KATHOLIEKE UNIVERSITEIT
Netherlands
EU contribution
€ 163 182
Address
Houtlaan 4
6525 XZ Nijmegen
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Hedi Claahsen-Van Grinten (Dr.)
THE UNIVERSITY OF BIRMINGHAM
United Kingdom
EU contribution
€ 172 421
Address
Edgbaston
B15 2TT Birmingham
Activity type
Higher or Secondary Education Establishments
Administrative Contact
May Chung (Ms.)
CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE
France
EU contribution
€ 149 640
Address
Rue Viguerie 2 Hotel Dieu Saint Jacques
31052 Toulouse Cedex 3
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Corinne Joffre (Dr.)
CENTRE HOSPITALIER UNIVERSITAIRE MONTPELLIER
France
EU contribution
€ 73 525
Address
Avenue Du Doyen Gaston Giraud 191
34000 Montpellier
Activity type
Other
Administrative Contact
Valérie Handweiler (Mrs.)
HOSPICES CIVILS DE LYON
France
EU contribution
€ 99 868
Address
Quai Des Celestins 3
69002 Lyon
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Administrative Contact
Odile Gelpi (Mrs.)
LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN
Germany
EU contribution
€ 150 000
Address
Geschwister Scholl Platz 1
80539 Muenchen
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Nicole Reisch (Dr.)
KAROLINSKA INSTITUTET
Sweden
EU contribution
€ 199 600
Address
Nobels Vag 5
17177 Stockholm
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Helena Nässén (Ms.)
UNIVERSYTET MEDYCZNY W LODZI.
Poland
EU contribution
€ 39 970
Address
Al. Kosciuszki, 4
90419 Lodz
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Kinga Zel
UNIVERSITAETSMEDIZIN GOETTINGEN - GEORG-AUGUST-UNIVERSITAET GOETTINGEN - STIFTUNG OEFFENTLICHEN RECHTS
Germany
EU contribution
€ 126 000
Address
Robert-koch-strasse 40
37075 Goettingen
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Christiane Hennecke (Ms.)
GABO:MI GESELLSCHAFT FUR ABLAUFORGANISATION:MILLIARIUM MBH & CO KG

Participation ended

Germany
EU contribution
€ 163 527
Address
Oskar Von Miller Ring 29
80333 Muenchen
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Birgit Fuchs (Mrs.)
INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA
Poland
EU contribution
€ 43 601
Address
Aleja Dzieci Polskich 20
04730 Warszawa
Activity type
Research Organisations
Administrative Contact
Maria Szarras-Czapnik
ASSISTANCE PUBLIQUE HOPITAUX DE PARIS
France
EU contribution
€ 160 754
Address
3 Avenue Victoria
75000 Paris
Activity type
Research Organisations
Administrative Contact
Alix Pillot (Ms.)
ARTTIC
France
EU contribution
€ 46 468
Address
Rue Du Dessous Des Berges 58A
75013 Paris
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Martin Dietz (Dr.)
STICHTING VUMC
Netherlands
Address
De Boelelaan 1117
1081 HV Amsterdam
Activity type
Research Organisations
Administrative Contact
Cedric Van Der Meulen (Dr.)