DSD-LIFE
Clinical European study on the outcome of surgical and hormonal therapy and psychological intervention in disorders of sex development (DSD)
| Coordinatore | CHARITE - UNIVERSITAETSMEDIZIN BERLIN
Organization address
address: Chariteplatz 1 contact info |
| Nazionalità Coordinatore | Germany [DE] |
| Totale costo | 3˙882˙167 € |
| EC contributo | 2˙999˙956 € |
| Programma | FP7-HEALTH
Specific Programme "Cooperation": Health |
| Code Call | FP7-HEALTH-2012-INNOVATION-1 |
| Funding Scheme | CP-FP |
| Anno di inizio | 2012 |
| Periodo (anno-mese-giorno) | 2012-10-01 - 2017-03-31 |
Partecipanti
| # | ||||
|---|---|---|---|---|
| 1 |
CHARITE - UNIVERSITAETSMEDIZIN BERLIN
Organization address
address: Chariteplatz 1 contact info |
DE (BERLIN) | coordinator | 881˙820.00 |
| 2 |
STICHTING VU-VUMC
Organization address
address: DE BOELELAAN 1105 contact info |
NL (AMSTERDAM) | participant | 221˙880.00 |
| 3 |
GABO:MI GESELLSCHAFT FUR ABLAUFORGANISATION:MILLIARIUM MBH & CO KG GAB O
Organization address
address: Oskar-von-Miller-Ring 29 contact info |
DE (MUENCHEN) | participant | 209˙995.00 |
| 4 |
ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS
Organization address
address: 3 Avenue Victoria contact info |
FR (PARIS) | participant | 202˙754.00 |
| 5 |
UNIVERSITAET ZU LUEBECK
Organization address
address: RATZEBURGER ALLEE 160 contact info |
DE (LUEBECK) | participant | 201˙600.00 |
| 6 |
KAROLINSKA INSTITUTET
Organization address
address: Nobels Vag 5 contact info |
SE (STOCKHOLM) | participant | 199˙600.00 |
| 7 |
THE UNIVERSITY OF BIRMINGHAM
Organization address
address: Edgbaston contact info |
UK (BIRMINGHAM) | participant | 172˙421.00 |
| 8 |
STICHTING KATHOLIEKE UNIVERSITEIT
Organization address
address: GEERT GROOTEPLEIN NOORD 9 contact info |
NL (NIJMEGEN) | participant | 163˙182.00 |
| 9 |
LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN
Organization address
address: GESCHWISTER SCHOLL PLATZ 1 contact info |
DE (MUENCHEN) | participant | 150˙000.00 |
| 10 |
CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE
Organization address
address: "Rue Viguerie, Hotel-Dieu Saint Jacques 2" contact info |
FR (TOULOUSE) | participant | 149˙640.00 |
| 11 |
UNIVERSITAETSMEDIZIN GOETTINGEN - GEORG-AUGUST-UNIVERSITAET GOETTINGEN - STIFTUNG OEFFENTLICHEN RECHTS
Organization address
address: Robert-Koch-Strasse 40 contact info |
DE (GOETTINGEN) | participant | 126˙000.00 |
| 12 |
CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER
Organization address
address: Avenue du Doyen Gaston Giraud 191 contact info |
FR (MONTPELLIER) | participant | 101˙025.00 |
| 13 |
HOSPICES CIVILS DE LYON
Organization address
address: 3 Quai des Celestins contact info |
FR (LYON) | participant | 99˙868.00 |
| 14 |
INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA
Organization address
address: Aleja Dzieci Polskich 20 contact info |
PL (WARSZAWA) | participant | 43˙601.00 |
| 15 |
UNIVERSYTET MEDYCZNY W LODZI.
Organization address
address: Al. Kosciuszki, 4 contact info |
PL (LODZ) | participant | 39˙970.00 |
| 16 |
WESTFAELISCHE WILHELMS-UNIVERSITAET MUENSTER
Organization address
address: SCHLOSSPLATZ 2 contact info |
DE (MUENSTER) | participant | 36˙600.00 |
Mappa
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Obiettivo del progetto (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 evidence base guidelines for treatment of DSD for which no dedicated treatment is currently approved. 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.'
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