WP03 - Data analysis and publication


Data analysis will be performed in small working groups according to the special expertises of the consortium members and result in specific data analysis plans, including statistical methods and interpretation of expected results. Main outcome measures as psychosocial adaption, HRQOL and psychological well-being will be evaluated. Using multivariate methods, the effects of sex assignment, surgery, hormones and metabolism, psychological treatment, cultural influences, and psychosexual development on the main outcome measures will be analysed. WP03 prepares the dissemination and publication of the study results and gives the basis to interaction with the public.

Work Package Description

Task 1: Analysis of main outcome measures
Main outcome measures as psychosocial adaption, HRQOL and psychological well-being will be evaluated in patient groups of different genetic entities. Comparisons between the groups and with population data will be conducted.

Task 2: Analysis of  treatment/intervention options
The impact of various off-label treatment/intervention options such as 1. sex assignment, 2. hormonal and 3. surgical treatments and 4. psychological interventions will be analyzed in relationship to the main outcomes in the different genetic entities. The analysis of bivariate results will result in multivariate models to explain the variance in outcomes.

Task 3: Analysis of interrelating factors

The different factors such as sex assignment, surgery, hormones, metabolism, fertility, cultural influences, socioeconomic status and psychosexual development are interrelating in outcomes of DSD. Major influencing factors on outcomes in the different genetic entities will be identified and investigated. The view of individuals with DSD will be particularly considered in evaluation of medical treatment, e.g. the need and timing of surgery. Specific needs of individuals with DSD of different cultural background will be identified. The number, reasons and complaints of individuals declining study participation and missing data will be evaluated to get some additional information from this subgroup.

Task 4: Dissemination and publication of study results
A list will be compiled with all planned scientific publications. The study results will be distributed to the scientific community through scientific meetings and published in scientific journals. All publications will be available via the web platform.