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
city: BERLIN
postcode: 10117

contact info
Titolo: Ms.
Nome: Eveline
Cognome: Fräßdorf
Email: send email
Telefono: +49 30 450576024
Fax: +49 30 450576954

 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

# participant  country  role  EC contrib. [€] 
1    CHARITE - UNIVERSITAETSMEDIZIN BERLIN

 Organization address address: Chariteplatz 1
city: BERLIN
postcode: 10117

contact info
Titolo: Ms.
Nome: Eveline
Cognome: Fräßdorf
Email: send email
Telefono: +49 30 450576024
Fax: +49 30 450576954

DE (BERLIN) coordinator 881˙820.00
2    STICHTING VU-VUMC

 Organization address address: DE BOELELAAN 1105
city: AMSTERDAM
postcode: 1081 HV

contact info
Titolo: Mr.
Nome: Johannes
Cognome: Klarenbeek
Email: send email
Telefono: +31 20 444 3231
Fax: +31 20 444 4947

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
city: MUENCHEN
postcode: 80333

contact info
Titolo: Mrs.
Nome: Birgit
Cognome: Fuchs
Email: send email
Telefono: +49 089 288 104 0

DE (MUENCHEN) participant 209˙995.00
4    ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS

 Organization address address: 3 Avenue Victoria
city: PARIS
postcode: 75004

contact info
Titolo: Ms.
Nome: Alix
Cognome: Pillot
Email: send email
Telefono: 33140274613

FR (PARIS) participant 202˙754.00
5    UNIVERSITAET ZU LUEBECK

 Organization address address: RATZEBURGER ALLEE 160
city: LUEBECK
postcode: 23538

contact info
Titolo: Mrs.
Nome: Gabriele
Cognome: Kipke
Email: send email
Telefono: +49 451 500 3018
Fax: +49 451 500 3016

DE (LUEBECK) participant 201˙600.00
6    KAROLINSKA INSTITUTET

 Organization address address: Nobels Vag 5
city: STOCKHOLM
postcode: 17177

contact info
Titolo: Ms.
Nome: Helena
Cognome: Nässén
Email: send email
Telefono: +46 8 517 73122
Fax: +46 8 517 76900

SE (STOCKHOLM) participant 199˙600.00
7    THE UNIVERSITY OF BIRMINGHAM

 Organization address address: Edgbaston
city: BIRMINGHAM
postcode: B15 2TT

contact info
Titolo: Ms.
Nome: May
Cognome: Chung
Email: send email
Telefono: 441214000000
Fax: 441214000000

UK (BIRMINGHAM) participant 172˙421.00
8    STICHTING KATHOLIEKE UNIVERSITEIT

 Organization address address: GEERT GROOTEPLEIN NOORD 9
city: NIJMEGEN
postcode: 6525 EZ

contact info
Titolo: Dr.
Nome: Hedi
Cognome: Claahsen-Van Grinten
Email: send email
Telefono: +31 24 3614430

NL (NIJMEGEN) participant 163˙182.00
9    LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN

 Organization address address: GESCHWISTER SCHOLL PLATZ 1
city: MUENCHEN
postcode: 80539

contact info
Titolo: Dr.
Nome: Nicole
Cognome: Reisch
Email: send email
Telefono: +49 89 51602111

DE (MUENCHEN) participant 150˙000.00
10    CENTRE HOSPITALIER UNIVERSITAIRE DE TOULOUSE

 Organization address address: "Rue Viguerie, Hotel-Dieu Saint Jacques 2"
city: TOULOUSE
postcode: 31059

contact info
Titolo: Dr.
Nome: Corinne
Cognome: Joffre
Email: send email
Telefono: 33561778286

FR (TOULOUSE) participant 149˙640.00
11    UNIVERSITAETSMEDIZIN GOETTINGEN - GEORG-AUGUST-UNIVERSITAET GOETTINGEN - STIFTUNG OEFFENTLICHEN RECHTS

 Organization address address: Robert-Koch-Strasse 40
city: GOETTINGEN
postcode: 37075

contact info
Titolo: Ms.
Nome: Christiane
Cognome: Hennecke
Email: send email
Telefono: +49 551 39 8770
Fax: 495514000000

DE (GOETTINGEN) participant 126˙000.00
12    CENTRE HOSPITALIER UNIVERSITAIRE DE MONTPELLIER

 Organization address address: Avenue du Doyen Gaston Giraud 191
city: MONTPELLIER
postcode: 34295

contact info
Titolo: Mrs.
Nome: Valérie
Cognome: Handweiler
Email: send email
Telefono: +33 4 67 33 96 43
Fax: +33 4 67 33 08 64

FR (MONTPELLIER) participant 101˙025.00
13    HOSPICES CIVILS DE LYON

 Organization address address: 3 Quai des Celestins
city: LYON
postcode: 69229

contact info
Titolo: Mrs.
Nome: Odile
Cognome: Gelpi
Email: send email
Telefono: +33 472406850
Fax: +33 472406869

FR (LYON) participant 99˙868.00
14    INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA

 Organization address address: Aleja Dzieci Polskich 20
city: WARSZAWA
postcode: 4730

contact info
Nome: Maria
Cognome: Szarras-Czapnik
Email: send email
Telefono: 48228157060
Fax: 48228157065

PL (WARSZAWA) participant 43˙601.00
15    UNIVERSYTET MEDYCZNY W LODZI.

 Organization address address: Al. Kosciuszki, 4
city: LODZ
postcode: 90419

contact info
Nome: Kinga
Cognome: Zel
Email: send email
Telefono: +48 42 272 59 62

PL (LODZ) participant 39˙970.00
16    WESTFAELISCHE WILHELMS-UNIVERSITAET MUENSTER

 Organization address address: SCHLOSSPLATZ 2
city: MUENSTER
postcode: 48149

contact info
Nome: Ingo
Cognome: Niendorf
Email: send email
Telefono: +49 251 8355881

DE (MUENSTER) participant 36˙600.00

Mappa


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

psychological    puberty    therapies    cortisone    mainly    rearing    genital    quality    treatment    influences    decision    disorders    androgen    life    individuals    dsd    impact    sex    outcome    synthesis    surgery    hormone   

 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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