The Duchenne Registry News, Winter 2019

Race to End Duchenne
WINTER 2019   
TDR Kim and Trent 02

The Ten Year Registry Report

We are excited to announce the release of the Ten Year Registry Report. This report is the culmination of data provided by YOU, the registrants in The Duchenne Registry, as well as collaborative work with expert clinicians and researchers over the past ten years. By joining the Registry and updating your account, you are strengthening the power of this 10-year old network of patient-powered data that will be used to improve care for people living with Duchenne and Becker. Thank you for becoming citizen scientists and contributing to important scientific research. Click the Learn More link below to read the PPMD blog and download a copy of the Ten Year Registry Report!

Finding the Right Clinical Trial for You or Your Child

Clinical Trial street signs AdobeStock 113258057

Are you getting confused by all the news and social media posts about clinical trials? Not sure which trials or studies may be appropriate for you or your child? You are not alone! Even healthcare providers are having a hard time staying informed about all the trials in the Duchenne space. One of the many benefits of The Duchenne Registry is that we perform “targeted recruitment” through the Registry. Click the Learn More link below to read the PPMD blog on this important topic.

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 edasalonexent trial (PolarisDMD) is recruiting ambulatory boys, ages 4-7 years, in the US and other countries.

PTC newlogo2016 resizedPTC will be recruiting boys with nonsense mutations for three ataluren trials. Listen to their recent webinar to learn more.

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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