What is the TREAT-NMD Global Registry Network?
New therapeutic strategies for neuromuscular diseases are being developed and some of these treatments require large studies involving patients from more than one country.
National and international patient registries can apply to become a TGDOC Member Registry and become part of the TREAT-NMD Global Registry Network.
Registries that meet specific criteria, including collecting the relevant TREAT-NMD Core Dataset(s) for their disease area(s) agree to share data to the TREAT-NMD Global Registry Network in response to specific enquiries. These datasets are a minimum a standardized core set of information that are not only useful for planning clinical trials but also recruiting patients into them.
‘The TREAT-NMD Global Registry Network is recognised as a leading source for trial planning and recruitment in these diseases at an international level.’
These registries help researchers to answer questions such as how common the individual diseases are across the world and support other activities to improve patient care, such as the assessment of care standards in different countries.
The TREAT-NMD Global Registry Network (also known as ‘TGDOC’) is governed by a Charter and managed by the TGDOC Executive Board. The Exec Board is responsible for reviewing the requests for data from the Global Registry Network and managing the enquiry governance and contracting.
Researchers and pharmaceutical companies interested in locating patients for a clinical trial are able to request information be sent to eligible patients via the TREAT-NMD Global Registry Network. Patients who may be eligible for a clinical trial will be informed through their own national registry and patients’ details are never disclosed directly to the researcher/company. If a patient wishes to take part in a clinical trial then they will be asked to contact their local trial site, information for which will be provided on any correspondence from the national registry curator, and not the company.
All of this will help ensure that promising new treatments can be brought to patients as quickly as possible.
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