Differences/ Disorders of sex development (DSD) is an umbrella term for rare conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. The Cambridge DSD database has been developed by Prof Hughes’ group and served as a resource for numerous clinical research projects. It holds information on medical history, clinical phenotype, results of biochemical and genetic tests, as well as on gonad histology and surgical procedures. Information is collected at routine clinic consultations and patients are not required to attend extra visits or undergo additional testing.
Patients, who are referred to the special DSD clinic at CUH, as part of their clinical care are assessed at the clinics. With patients’ or guardians’ written consent, we will be recruited to the Cambridge DSD database. The database will be stored in the CUH NHS Trust and the access will be limited to the clinicians involved in the direct clinical care for clinical purpose.
The research studies which require access to the Cambridge DSD database will need separate ethical approval. A Data Access Committee, which consists of CI, Co-PI and an R&D representative, will consider proposals for access to limited, de-identified datasets.