Global Data systems Oversight Committee – TGDOC

The TREAT-NMD Global Data systems Oversight Committee (TGDOC) includes Member Registry Curators, Patient Representatives, and representatives of the TREAT-NMD Ethics Board.  It is governed by an Executive Board, comprised of the TREAT-NMD Services CEO, the TREAT-NMD Global Enquiries Manager and TREAT-NMD Global Registries Support Assistant. All members are required to sign Confidential Disclosure Agreements (CDAs). 

TGDOC is responsible for reviewing requests for data or recruitment support from the Global Registries Network. A streamlined procedure is in place to ensure approvals for data aren’t delayed – TGDOC can usually make an initial approval of whether a data request should proceed within 14 days. 

All regional, national and international registries that are part of the TGDOC are governed by a Charter. It outlines the relationship of the individual registries with TGDOC, and defines the basic requirements for registries to become and remain a TGDOC registry. It also defines the relationship of the TGDOC with third parties (such as industry and academic partners who wish to use the Global Registries Network for research or clinical trials).  The Charter is an integral part of agreements and contracts related to and involving the Global Registries Network. 

 The TGDOC Executive Board members: