TREAT-NMD Global Database Oversight Committee – TGDOC
The TREAT-NMD Global Database Oversight Committee (TGDOC) is composed of representatives of the TREAT-NMD Alliance (Clinical Trial Coordination Centre; Care and Trial Site Registry, Project Ethics Council), patient organizations, and TREAT-NMD registry curators.
All members of the TGDOC must disclose their financial and non-financial interests and any potential conflicts of interest on an annual basis. All members of the TGDOC are required to sign confidentiality agreements if a third party requests them prior to having access to the inquiry of the third party.
The TGDOC is responsible for reviewing the requests for data from the TREAT-NMD Global Registries. This is intended to be a streamlined and rapid procedure in order not to delay approval. Requests for data will be responded to within a set time period of 14 days. An outline of the timescale for an enquiry into the TREAT-NMD Global Registry can be found.
All national registries that are part of the TREAT-NMD Global Registries are governed by a Charter. The Charter outlines the relationship of the national registries with their TREAT-NMD Global Registry, defines the basic requirements for registries to become and remain a TREAT-NMD registry. It also defines the relationship of the TREAT-NMD Global Registries with third parties (such as industrial and academic partners aiming to use the TREAT-NMD Global Registries for research or clinical trials) and is an integral part of agreements and contracts related to and involving the TREAT-NMD Global Registries.
A list of all TGDOC members is provided below, together with their financial and non-financial disclosure statements.