Newsletter
Spring 2022

Welcome to our TGDOC spring newsletter where you can find all the latest dataset and Global Registry platform updates, updates from disease subgroups, events, publications, and much more all in one place.

Articles in the edition...

Global registry platform
TREAT-NMD upcoming events
TREAT-NMD dataset updates

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Registry Engagement Events

TREAT-NMD Datasets Update

Thank you to everyone who attended our Registry Engagement Event. We appreciate you all taking the time to hear the changes we have made and others we are implementing, following feedback from the Global Registry Network. We hope you also enjoyed hearing about the potential data-sharing opportunities that are in the pipeline with pharmaceutical regulatory agencies such as the European Medicines Agency (EMA).

We have prepared a short survey that will provide us with useful feedback on what we are doing/planning, and give us a better understanding of how we can support the registries. The survey will close on Friday 13 May!

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Global Registry Enquiries Update

Since the start of 2022 we have supported or facilitated three enquiries and surveys within the Global Registries Network.

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Registry Review Survey

Our annual registry review survey is currently taking place using Monday.com.

We encourage registries to familiarise themselves with the portal and update their data by the end of May.

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TREAT-NMD Global Registry Platform Update

The TREAT-NMD Global Registries Platform (GRP) provides a secure place for organisations to host their patient registries and share data with TREAT-NMD.

If you would like to see a demonstration of the platform or have any questions...

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TGDOC Subgroup Leads

We would like to thank Ilaria Zito, Miriam Rodrigues and Rossella Tupler for the leadership they have provided across the DMD, SMA and FSHD subgroups respectively, over the past few years.

As of April 1st 2022...

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TREAT-NMD Publications and Abstracts

We appreciate how important it is for TGDOC member registries that the data they collect is used to write papers, conference posters and other publications.

Since January we have worked with the TGDOC Chairs and Subgroup leads to submit poster abstracts to more than 5 conferences – a total of 15 abstracts covering 6 different conditions.

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Spotlight on Myotubular and Centronuclear Patient Registry

We love to include articles submitted by our affiliated registries, and this issue we are highlighting the international Myotubular and Centronuclear Myopathy Patient Registry...

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TREAT-NMD presents to Global Alliance for Myotonic Dystrophy Awareness

We would like to thank the Myotonic Dystrophy Foundation for providing us with the opportunity to present...

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Upcoming TREAT-NMD Events

TREAT-NMD has some exciting events coming up over the few months...

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Newsletter Spring 2022