The Project “DSDCare”
Standardized healthcare-center-centered care of DSD (Differences of Sex Development) over the life span
Various studies show that people with DSD (“Differences of Sex Development”) feel inadequately cared for by the healthcare system. They complain about a deficit of medical expertise and a lack of willingness to address the specificity of gender development also in the social context. This leads to mis-treatment, under-treatment and over-treatment.
The problems in caring for people with DSD are characterized by the fact that there are a large number of specific variants, that the care is quite complex, and that there is often no evidence regarding the care. In addition, there is a lack of collaboration between the disciplines needed to provide care.
Thus, harmonization of care for people with DSD in Germany, as well as integration of and collaboration between common and specialized fields of expertise, is necessary to ensure adequate, guideline-based care for people with DSD.
Objective of DSDCare
The objective of DSDCare is to establish meaningful care pathways and patient-centered processes in participating centers to achieve long-term improvement in the quality of structure, process, and outcomes of care for people with DSD across the lifespan.
The project DSDCare involves ten medical centers specialized in DSD, two self-organizations and two research institutes.
During the project period of three years, various tools and measures to improve the care of people with DSD will be jointly developed by the project partners and implemented in the centers. These include:
- development and implementation of standardized operating procedures (SOPs)
- development and implementation of patient training courses
- establishment of a coordinating point of contact (InfoDSD)
- development of web-based training courses for physicians
- establishment of cross-center case conferences
- harmonization of hormone analysis
- development of a uniform procedure for genetic diagnostics
In order to evaluate the success of the measures, a central care register (DSDReg) will be established in parallel on the basis of the Open Source Registry System for Rare Diseases (OSSE), in which both patient- and center-based data will be collected. Using the quality parameters developed previously, the structural, process and outcome quality of care will be evaluated. The results are reported back to the participating centers in a periodical benchmarking, which supports a continuous improvement of the care of people with DSD.
05/01/2020 – 04/30/2023
Funding reference number: 2519FSB503