Multicentre cross-sectional clinical evaluation study about quality of life in adults with disorders/differences of sex development (DSD) compared to country specific reference populations (dsd-LIFE)

被引：0

作者：

Marion Rapp

Esther Mueller-Godeffroy

Peter Lee

Robert Roehle

Baudewijntje P. C. Kreukels

Birgit Köhler

Anna Nordenström

Claire Bouvattier

Ute Thyen

机构：

[1] Universitat zu Lubeck,Klinik fur Kinder

[2] Pediatrics, und Jugendmedizin

[3] Penn State College of Medicine,Medische Psychologie en Medisch Maatschappelijk Werk

[4] Charite,Department of Women’s and Children’s Health, Karolinska Institutet

[5] Campus Virchow-Klinikum,Endocrinologie pediatrique, Centre de reference des maladies rares du developpement sexuel, Hopital Bicetre

[6] Koordinierungszentrum fur Klinische Studien (KKS Charite),undefined

[7] VU Medisch Centrum,undefined

[8] Charite,undefined

[9] Campus Virchow-Klinikum,undefined

[10] Klinik fur Padiatrie mit Schwerpunkt Endokrinologie und Diabetologie,undefined

[11] Karolinska University Hospital,undefined

[12] Universite Paris-Sud,undefined

[13] 78 rue du General Leclerc,undefined

来源：

Health and Quality of Life Outcomes | / 16卷

关键词：

Disorders of sex development; Quality of life; Rare disorders; Health status; General population;

D O I：

暂无

中图分类号：

学科分类号：

摘要：

引用

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[1] Multicentre cross-sectional clinical evaluation study about quality of life in adults with disorders/differences of sex development (DSD) compared to country specific reference populations (dsd-LIFE)
Rapp, Marion
Mueller-Godeffroy, Esther
Lee, Peter
Roehle, Robert
Kreukels, Baudewijntje P. C.
Koehler, Birgit
Nordenstroem, Anna
Bouvattier, Claire
Thyen, Ute
HEALTH AND QUALITY OF LIFE OUTCOMES, 2018, 16
[2] Sexuality in Adults with Differences/Disorders of Sex Development (DSD): Findings from the dsd-LIFE Study
Kreukels, Baudewijntje P. C.
Cohen-Kettenis, Peggy T.
Roehl, Robert
van de Grift, Tim C.
Slowikowska-Hilczer, Jolanta
Claahsen-van der Grinten, Hedi
Hirschberg, Angelica Linden
de Vries, Annelou L. C.
Reisch, Nicole
Bouvattier, Claire
Nordenstrom, Anna
Thyen, Ute
Koehler, Birgit
Cohen-Kettenis, Peggy
de Vries, Annelou
Arlt, Wiebke
Wiesemann, Claudia
de la Perriere, Aude Brac
Sultan, Charles
Paris, Francoise
Richter-Unruh, Annette
Pienkowski, Catherine
Szarras-Czapnik, Maria
JOURNAL OF SEX & MARITAL THERAPY, 2019, 45 (08) : 688 - 705
[3] Participation of adults with disorders/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population
Robert Röhle
Katharina Gehrmann
Maria Szarras-Czapnik
Hedi Claahsen-van der Grinten
Catherine Pienkowski
Claire Bouvattier
Peggy Cohen-Kettenis
Anna Nordenström
Ute Thyen
Birgit Köhler
BMC Endocrine Disorders, 17
[4] Participation of adults with disorders/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population
Roehle, Robert
Gehrmann, Katharina
Szarras-Czapnik, Maria
Claahsen-van der Grinten, Hedi
Pienkowski, Catherine
Bouvattier, Claire
Cohen-Kettenis, Peggy
Nordenstrom, Anna
Thyen, Ute
Koehler, Birgit
BMC ENDOCRINE DISORDERS, 2017, 17
[5] Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE)
Ute Thyen
Till Ittermann
Steffen Flessa
Holger Muehlan
Wiebke Birnbaum
Marion Rapp
Louise Marshall
Maria Szarras-Capnik
Claire Bouvattier
Baudewijntje P. C. Kreukels
Anna Nordenstroem
Robert Roehle
Birgit Koehler
BMC Health Services Research, 18
[6] Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE)
Thyen, Ute
Ittermann, Till
Flessa, Steffen
Muehlan, Holger
Birnbaum, Wiebke
Rapp, Marion
Marshall, Louise
Szarras-Capnik, Maria
Bouvattier, Claire
Kreukels, Baudewijntje P. C.
Nordenstroem, Anna
Roehle, Robert
Koehler, Birgit
BMC HEALTH SERVICES RESEARCH, 2018, 18
[7] Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE)
Rapp, Marion
Duranteau, Lise
Grift, Tim C. van de
Schober, Justine
Hirschberg, Angelica L.
Krege, Susanne
Nordenstrom, Anna
Roehle, Robert
Thyen, Ute
Bouvattier, Claire
Kreukels, Baudewijntje P. C.
Nordenskjold, Agneta
JOURNAL OF PEDIATRIC UROLOGY, 2021, 17 (03) : 353 - 365
[8] Commentary to self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE)
Glassberg, Kenneth I.
JOURNAL OF PEDIATRIC UROLOGY, 2021, 17 (03) : 366 - 367
[9] Letter to Editor. Comment on: "Self- and proxi-reported after surgery in people with Disorders/Differences of Sex Development (DSD) in Europe (dsd-LIFE)"
Scarpa, Maria-Grazia
JOURNAL OF PEDIATRIC UROLOGY, 2021, 17 (03) : 370 - 371
[10] Response to commentary re 'Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE)'
Nordenskjold, Agneta
van de Grift, Tim
JOURNAL OF PEDIATRIC UROLOGY, 2021, 17 (03) : 368 - 369

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