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Our next webinar on the 1st April is about modeling disease progression in GNE myopathy
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Delivered by: Melanie Quintana Description: We describe a Bayesian repeated measures model based on quantitative muscle strength data from a prospective Natural History Study at the NIH that was developed to determine disease progression and design clinical trials for GNE myopathy, a rare and slowly progressive muscle disease. The GNE disease progression model can…
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The semestral Euro-NMD Registry Hub March 2021 newsletter is out
Progress has been made with the EURO-NMD Registry Hub project, as the team is working on the FAIRification of the registry. This means that it should be possible for health records written in different languages, formats and stored in different registries to be combined, achieving interoperability. The project will demonstrate how the EURO-NMD Registry…
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Returning individual clinical trial data back to participants
The Vision-DMD trial white paper highlights the need for clinical trials to consider the return of patient study data directly to the families participating, allowing access to their clinical trial data without compromising the study, to provide an opportunity for participants to connect their clinical trial data with their clinical care information.
This white paper concludes that returning data promotes autonomy in patients and encourages future research participation with both clinical and individual relevance.
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As we become aware of future meetings being rescheduled, cancelled or moved to an online format we will make the appropriate adjustments to the information on our website.
At this very uncertain time we are trying to ensure we capture all changes but we would ask if you know of any changes to meetings that are of interest to the neuromuscular community to let us know so we can help inform the whole community - info@ern-euro-nmd.eu
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European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy 26 - 28 May 2021 -registration open
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As part of Solve-RD, Solving the unsolved rare diseases, a European project H2020 (http://solve-rd.eu/) on genetic research, the Health Economics Team of the Economics Laboratory of Dijon (University of Burgundy) organises the “European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy” from May 26th to 28th, 2021. We are pleased to announce…
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WMS Congress 21-25 September 2021 is going virtual.
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Building on the recent success of the WMS 2020 Virtual Congress and the ongoing uncertainty around the COVID-19 situation the Executive Board of WMS has taken the decision to move forward with a virtual congress for 2021. We therefore look forward to welcoming you on-line again for 2021! Further updates in the coming weeks and…
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EAN decides to hold virtual congress in June 19-22 2021
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Due to the continuing COVID-19 pandemic the European Academy of Neurology has decided to go virtual again for the 7th EAN Congress on June 19-22, 2021, originally to be held in Vienna.
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Setting up a FAIR registry for Euro-NMD
Watch this video-presentation by Peter-Bram van ‘t Hoen, where he shares his first experiences and plans for setting up an European Reference Network (ERN) for neuromuscular disorders. It includes useful explanations about concepts such as FAIR data and “FAIRification”.
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