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The European DSD Registry has a panel that consists of members of the ESPE DSD Group (www.eurospe.org/about/workinggroups/DSD.html). Prospective users are expected to complete a simple online-application form to apply to this panel for approval. There are 2 broad categories of users of the registry: clinical partners and research partners.

Clinical partners are eligible to enter data into the registry. Only full members of a national or international clinical professional society are allowed to become a clinical partner and need to show proof of membership. To ensure maximum levels of governance of clinical data, applications from more than one clinical partner from the same institution is discouraged. Each clinical partner can identify other members of their team who will require access and act as local data contributor. Thus, the clinical partner will remain responsible and accountable for data entry. The level of data sharing is configurable and can be done at a local level, a national level, a Euro-DSD level, or a wider international level as deemed appropriate by the clinical collaborator. Thus, non-Euro-DSD members are able to use the registry to add their own data and use it as a local store. In this case, these data sets are not accessible to other partners or EuroDSD members. The clinical partner is responsible for provision of information to the patient and obtaining consent.

Currently, the research partners within the EuroDSD consortium are the only research partners. It is envisaged that after the lifetime of the EUFP7-funded EuroDSD programme new research partners shall be able to apply to the ESPE DSD registry panel with brief details of their proposed study and search criteria. Research partners are required to demonstrate that they have obtained ethics approval for their respective studies. The panel shall be able to indicate the number of cases that fulfil the recruitment criteria of the investigator’s studies and, for a fixed fee, provide contact details of the clinical partner responsible for the cases.

Some partners may have joint clinical and research partner status. These partners need to continue renewing their research partner status.