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Newsletter
January 2022
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Welcome to our TGDOC Winter 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...
TGDOC Annual Curators' meeting 2021
Welcome to Ben Porter who has recently joined TREAT-NMD Service Ltd
TGDOC Memberships
TGDOC Registry Bursary Scheme now live
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TGDOC Annual Curators' Meeting 2021
The TGDOC Executive Board would like to thank all attendees and contributors who attended the TGDOC Annual Curators’ Meeting between Monday 22nd and Wednesday 24th November 2021 on the Whova platform. The Curators’ Meeting is a valuable opportunity for all TGDOC Member Registries to share knowledge and learn about updates relating to the work of the TREAT-NMD Global Registry Network. This year, due to the Coronavirus pandemic, the meeting was held online and we are pleased to welcome 131 registered attendees from TGDOC Member Registries...
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Welcome to Ben Porter Who has Recently Joined TREAT-NMD Services ltd
Name: Ben Porter Role: Global Registry and Market Development Manager We would like to welcome and introduce everyone to Ben Porter, a new employee of TREAT-NMD Services Ltd...
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TGDOC Memberships
As of 19th January 2022, a total of 61 neuromuscular disease patient registries around the world have TGDOC Membership. A further 5 registries are working through the membership process, and we have been contacted by 5 registries in development who intend to join TGDOC once their registries are up and running...
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Registry Bursary Scheme Now Live
The TGDOC Executive Board is pleased to announce the launch of the TGDOC Registry Bursaries pilot scheme. As discussed during the recent TGDOC Annual Curators Meeting, this has been developed in response to requests for funding support from TGDOC Member Registries...
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TGDOC Subgroup Lead Update
TGDOC are pleased to welcome the latest registry curator to join as disease-specific subgroup co-lead...
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Summary of TGDOC / Global Registry Enquiries
We have continued to support registry enquiries. This has included: An ongoing global Spinal Muscular Atrophy data enquiry from an academic institution. We have also had a number of information requests from contract research organisations, industry and academics with communication continuing...
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SAVE THE DATE: TREAT-NMD TGDOC / Global Registry Network Engagement Event
As you know TREAT-NMD Services Ltd has existed for over 18 months now and we feel that it is important that everyone who is part of the TREAT-NMD TGDOC / Global Registries Network understands who we are and how we have evolved from the TREAT-NMD Alliance...
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TREAT-NMD Global Registries Platform
The Global Registries Platform project team had a fantastic year in 2021 and had some great achievements...
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Registry Portals
It was announced at the Annual Curators’ meeting that TREAT-NMD Monday.com Registry Portals were due to be launched in December. Unfortunately, due to some unavoidable delays we were unable to launch these portals on time...
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Duchenne Muscular Dystrophy Expanded Core Dataset project update
Following on from a successful year of growth and development in 2021 the Duchenne Muscular Dystrophy (DMD) Expanded Core Dataset Project team is looking forward to 2022...
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Limb Girdle Muscular Dystrophy Core Dataset Project Update
Following on from the successful development and launch of the new Limb Girdle Muscular Dystrophy (LGMD) core dataset we are looking forward to 2022. The team has started to engage with registries virtually to progress the adoption of v1 of the LGMD dataset which launched in November 2021 as the first official TREAT-NMD LGMD dataset for use in registry enquiries...
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TREAT-NMD Conference Early Bird Tickets Extended!
Want to attend the TREAT-NMD Conference in Vancouver Canada? You can get your ticket now and still enjoy the early bird discount! The early bird offer has now been extended until 28th February. Get your tickets now and secure your place at the 7th TREAT-NMD Conference. You can purchase tickets through the conference website...
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Upcoming Education Events at TREAT-NMD
Are you a healthcare professional? Interested in learning more about diagnosis and standards of care for neuromuscular diseases? Then attend one of our education events in 2022...
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