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

Conditions

Q96 Q97 Q98 Q99

Bennecke E, Bernstein S, Lee P, van de Grift TC, Nordenskjöld A, Rapp M, Simmonds M, Streuli JC, Thyen U, Wiesemann C, dsd-LIFE Group.

2021-03-1230 citations

10.1007/s10508-021-01953-6

Breast development and satisfaction in women with disorders/differences of sex development

Tim C. van de Grift, Baudewijntje P.C. Kreukels, dsd-LIFE

Human Reproduction2019-10-0913 citations

10.1093/humrep/dez230

Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries

A. de Vries, Robert Roehle, Louise Marshall, Louise Frisén, Tim C. van de Grift et al. (12 authors)

Psychosomatic Medicine2019-06-20105 citations

10.1097/psy.0000000000000718

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 et al. (14 authors)

BMC Health Services Research2018-07-0543 citations

10.1186/s12913-018-3342-0

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 M, Mueller-Godeffroy E, Lee P, Roehle R, Kreukels BPC, Köhler B, Nordenström A, Bouvattier C, Thyen U, dsd-LIFE group.

2018-04-0335 citations

10.1186/s12955-018-0881-3

Participation of adults with disorders/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population.

Röhle R, Gehrmann K, Szarras-Czapnik M, Claahsen-van der Grinten H, Pienkowski C, Bouvattier C, Cohen-Kettenis P, Nordenström A, Thyen U, Köhler B, dsd-LIFE group.

2017-08-1848 citations

10.1186/s12902-017-0198-y

Interventions

Group 1: Data is collected about the group of patients/subjects with disorders of sex development. This is done by questionnaires and physical examinations about 1 Gender assignment, 2 Surgical treatm

Eligibility

Sex/Gender

All

Age

16 Years to No maximum

Inclusion criteria

Inclusion criteria: • People with aberrations of the sex chromosomes, XY DSD and DSD YX. • Persons with capacity to consent.

Exclusion criteria

Exclusion criteria: • People with inadequate cognitive skills for independent answering the questionnaires.

Design outcomes

Primary

Measure	Time frame
Factors that influence the psychosocial adjustment, including HRQoL and the social and psychological well-being for the future clinical care.	—

Secondary

Measure	Time frame
Factors that influence metabolism, fertility, surgical results and psychosexual development in order to adjust them in the future clinical care.	—

Countries

France, Germany, Netherlands, Poland, Sweden, United Kingdom

Contacts

Public ContactBirgit Köhler

Charité - Universitätsmedizin Berlin Campus Virchow-Klinikum Institut für Experimentelle Pädiatrische Endokrinologie

eustudie-koehler@charite.de+493045050

Outcome results

None listed