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.
Anna Ambrosini, PhD, is coordinator of the activities of the Italian TREAT-NMD partner Fondazione Telethon (FTELE). She works by the Telethon Scientific Office in Milan where she is responsible for …Italy
Dr Campbell practices at the Children’s Hospital-London Health Sciences Centre and at the University of Western Ontario, where he is an Associate Professor of Pediatrics, Clinical Neurology, and Epidemiology and …Canada
Dr Nathalie Goemans (M.D. PhD) is a paediatrician and child neurologist, with certification in rehabilitation medicine and is currently head of the Neuromuscular Reference Centre within the department of Paediatrics …Belgium