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Newsletter
Summer 2022
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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...
- TREAT-NMD Membership update
- Annual Curators Meeting
- TREAT-NMD Upcoming Events and Conference
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TGDOC New Members
A very warm welcome to our TGDOC new members
- Dutch LGMD Registry
- Swedish National Registry for Neuromuscular Disorders (NMiS)
- Romanian DMD/DMB Patient Registry
- Telethon Registry of Neuromuscular Diseases (Mexico)...
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TGDOC Annual Curators Meeting
You may have received an email with regards to the TGDOC Annual Curator’s meeting (ACM) that will take place in conjunction with the TREAT-NMD Conference in Vancouver, Canada...
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The TREAT-NMD 7th International Conference
The 7th International TREAT-NMD Conference will be a fantastic opportunity for patients, academics, clinicians, patient registry curators and industry representatives, to get together to network, learn and exchange ideas about translational research...
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TREAT-NMD Team Update
We are very pleased to announce several new additions to our growing team at TREAT-NMD...
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LGMD and DMD Dataset Project Update
The Duchenne Muscular Dystrophy (DMD) and Limb Girdle Muscular Dystrophy project teams continue to engage with and support registries to progress the adoption of the new datasets. There are eight registries who have adopted the DMD dataset in their existing platforms and five have adopted the dataset via the Global Registry Platform...
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SMA Dataset Project Update
As you may know, TREAT-NMD significantly expanded the SMA core dataset between 2018 and 2020, and all TGDOC member registries are now asked to comply with SMA Core Dataset v.2, or at least begin working towards it...
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TREAT-NMD Posters
Since the start of this year the team at TREAT-NMD have worked with the TGDOC Chairs, subgroup leads and curators to submit abstracts to several conferences around the world. In June, posters were presented at the Cure SMA Research and Care meeting, the IDMC and FSHD ICNMD conferences...
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2023 Myotonic Dystrophy Foundation Early Career Research Grant RFA
This year the Myotonic Dystrophy Foundation (MDF) intends to issue up to two, two-year awards of up to $380,000 at $190,000 per award for early career scholars in the DM field for projects that focus on basic, translational and/or clinical research or care projects in myotonic dystrophy...
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