The Duchenne Registry News, Summer 2019

Race to End Duchenne
SUMMER 2019   
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NEW Mobile App Platform Launching Summer 2019

We are in the final stages of upgrading The Duchenne Registry to a new and improved app-based platform! We are excited about this enhancement - this new app will allow you to more easily answer surveys while on your smartphone, and you will receive app notifications that remind you when it's time to update your account. The Duchenne Registry will be offline for a few weeks in July in order to migrate all the data to our new platform. When we launch the new platform in August, you will receive an email invitation (at the email address on your registry account) with a link and activation code for downloading The Duchenne Registry Mobile App. We appreciate all you've shared with the Registry and look forward to making the new Registry an even more powerful and effective tool to End Duchenne! If you have any questions during the downtime and transition, please do not hesitate to contact the Registry staff.

Your Data At Work

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A study using Registry data was published in May in a well-known international journal, BMC Neurology. This study was led by researchers at Catabasis Pharmaceuticals and focused on the Registry's corticosteroid data. The title of the manuscript is "Variability and trends in corticosteroid use by male United States participants with Duchenne muscular dystrophy in The Duchenne Registry." The Catabasis team, led by Joanne Donovan, MD, PhD, wanted to gain a better understanding of corticosteroid use in the US since the establishment of the Duchenne Care Guidelines. If you live in the US and completed the Muscle Function and Corticosteroid surveys between 2007-2016, it is very likely that your data was used in this study! 

Featured Recruitment

Roche GenentechThe RG6206 anti-myostatin adnectin trial is currently recruiting ambulatory boys, ages 6-11 years, in the US and other countries.

TDR CatabasisThe PolarisDMD is currently recruiting ambulatory boys with Duchenne, ages 4-7 years old in the US and other countries.

TDR ItalfarmacoThe givinostat trial is actively recruiting ambulatory boys with Duchenne, ages 6-17, in the US and other countries. 

TDR SantheraThe SIDEROS (idebenone) trial is currently recruiting boys with Duchenne, ages 10 years and older, in the US and other countries.

TDR promo DecodeDuchenne 2018

Decode Duchenne provides FREE genetic testing and counseling to eligible males AND females!

Contact us at the numbers below to find out how we can help you!

  

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