TREAT-NMD Global Data systems Oversight Committee – TGDOC
The TREAT-NMD Global Data systems Oversight Committee (TGDOC) is composed of TGDOC Member Registry Curators, Patient Representatives, and representatives of the TREAT-NMD Ethics Board and TREAT-NMD Care and Trial Site Registry.
TGDOC is governed by the TGDOC Executive Board, which is comprised of a Chair troika, the TREAT-NMD Services CEO, the TREAT-NMD Global Enquiries Manager and the TREAT-NMD Global Registries Support Assistant.
All members of TGDOC are required to sign Confidential Disclosure Agreements (CDAs).
TGDOC is responsible for reviewing requests for data or recruitment support from the Global Registries Network (also known as the ‘Global Data systems’). 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.
All regional, national and international registries that are part of the TGDOC are governed by a Charter. The Charter 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 industrial and academic partners aiming to use the Global Registries Network for research or clinical trials) and is an integral part of agreements and contracts related to and involving the Global Registries Network.
Below is a list of the TGDOC Executive Board members:
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
Michela Guglieri, MD, is a Senior Clinical Lecturer and Consultant Neurologist at Newcastle University and Newcastle Hospitals NHS Foundation Trust. Michela has a specific interest in care, management and translational …United Kingdom
Global Registries Support Assistant
Emma has over 17 years progressive career within the civil service, working on multiple projects across many departments. In her most recent role within Natural England, Emma was Lead Adviser …United Kingdom
Global Registry Enquiries Manager
Helen is the main point of contact for initiatives relating to the TREAT-NMD Global Registries Network. She is also a member of the TGDOC Executive Board and the TREAT-NMD Secretariat.United Kingdom