About the DSD-TRN
DSDTRN is the Disorders of Sex Development Translational Research Network. We are dedicated to setting standards of care for patients and families living with DSD.
At each of our sites, we offer the services of a multidisciplinary clinical team - endocrinologist, geneticist, urogenital surgeon, psychosocial support professionals. All are trained in the specific care of DSD patients and offer concerted care in order to minimize genital exams and to provide consistent guidance to patients.
In addition, we work closely with our Advocacy Advisory Board, composed of representatives of patient advocacy groups and DSD support groups, under the helm of the Accord Alliance.
We are also continuously engaged in research to assess and respond to the specific needs of DSD patients. Examples of current research emphasis include: developing psychosocial assessment tools specific to the needs of DSD families; developing tools to minimize the need for genital photography; assessing efficacy of and compliance to standards-of-care; discovering new genes causing DSDs.
The Federal funding by the NICHD (National Institute for Children's Health and Development) allows us to develop clinical data collection forms tailored to the care of DSD patients that our clinicians now use in their practice. We are also in the process of creating a registry of clinical data. While DSD conditions in general are relatively frequent, each individual type is rather rare, and sometimes poorly understood. By pooling the expertise and data from our mulitple sites, we will increase our experts' ability to offer optimal, personalized care for each patient and family. All data entered into the registry is de-identified to ensure the privacy of our patients.
You can learn more about each team by clicking on their logos in the "clinical sites links" box on the right.