The Global Registry Network
Our Global Registry Network is a federated network of individual, independent, national (or regional) patient registries that collect data on neuromuscular patients from more than 60 countries worldwide. It includes registries collecting data from clinicians, patients, or both, with some patient-reported registries employing varying levels of verification by curators, clinicians, or geneticists.
The TREAT-NMD Global Registry Network brings together independent neuromuscular diseases (NMD) patient registries from across the world. The federated network currently has 64 registry members (either NMD- or disease-specific), who, together are collecting data on approximately 80,00 NMD patients.
Working together allows registries to provide data on larger groups of patients, to share learning between registries, and benefit from efficiencies in centralised contracting etc. Importantly, registries retain ownership and control of their data.
TREAT-NMD coordinates this activity, and provides research communication support (e.g. to write abstracts, posters, and publications) and facilitates global registry data enquiries and projects (including statistical analysis, contracting and assurance provision).
The network can respond to data or recruitment requests to support industry, academics, patient organisations and regulators. The registries in our network are currently delivering data for a range of purposes from post authorisation, natural history, and clinical trial feasibility studies through to clinical trial recruitment.
The activity of the registry network is overseen by the TREAT-NMD Global Data Systems Oversight Committee (TGDOC) and member registries agree to abide by the TGDOC charter.
Joining the TREAT-NMD Global Registry Network
The registry network is inclusive, and welcomes new members wherever possible.
Registries joining our network follow an established membership process and includes everything you need to know about the different types of membership including links to all the documents you may need. To join the TGDOC network and start the membership process please contact our registries team.
TREAT-NMD Global Registries Platform
TREAT-NMD has developed a Global Registries Platform (GRP) that is made available to member registries free of charge. It uses cloud-based technology to providing a user-friendly environment for patient registries to collect patient data. The GRP enables even the smallest registries to collect standardised information on their patients.
It is designed to provide an ‘off-the-shelf’ experience for registries, through a software-as-a-service agreement. TREAT-NMD Services Ltd customises the platform for each user (for example, choosing whether clinicians or patients report data) and provides training and support.
The platform can currently store data on patients living with Duchenne and Becker muscular dystrophy, limb-girdle muscular dystrophy or spinal muscular atrophy. The platform is compliant with data protection and other relevant regulations. Each registry maintains ownership of their data, and only users approved by registry curators can access it.
If you would like more information about the Global Registries Platform or would like to register your interest, please do get in touch.
Bringing eligible patients and relevant clinical trials together is a key challenge in rare disease research and the TREAT-NMD Global Registry Network can facilitate this on behalf of industry or academics.
The TREAT-NMD Global Registry Network brings together independent neuromuscular diseases (NMD) patient registries from across the world. The federated network currently has 64 registry members (either NMD- or disease-specific), who, together are collecting data on approximately 80,00 NMD patients.
TREAT-NMD coordinates the activity of the network, and provides a single point of contact to the entire registry network to facilitate global registry data enquiries and projects to support industry, academics, patient organisations and regulators. This activity is overseen by the TREAT-NMD Global Data Systems Oversight Committee (TGDOC).
The registries in our network are currently delivering data for a range of purposes from post authorisation, natural history, and clinical trial feasibility studies through to clinical trial recruitment. Using the registries network as a trial design or recruitment tool can save valuable time and resources and help meet recruitment targets more quickly and easily.
Key benefits of the TREAT-NMD registries:
- One single entry point for access to patient data worldwide.
- Registries contain accurate, verified genetic diagnosis together with key clinical data items including medication use and ambulation status.
- Registries contain detailed patient-level, longitudinal data.
- Registries are asked to update data at least once a year.
- Aggregate data enquiries can provide numbers of patients who meet precise mutation, age, ambulation status, medication type and location.
Feasibility Studies
The registry network allows companies to conduct clinical trial feasibility assessments with far less effort and at an earlier stage than before. Questions ranging from the number of patients per country fulfilling certain inclusion criteria can be answered with a targeted feasibility enquiry to our registries. This results in valuable information helping you establish how which countries a study could target. If you are interested in this type of enquiry, you can contact us or complete the form below.
Registry enquiry
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