The Duchenne Registry News, Summer 2018

Race to End Duchenne
SUMMER 2018   
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DuchenneConnect is now The Duchenne Registry

PPMD is thrilled to annouce that DuchenneConnect is now The Duchenne Registry. We recently reached a significant milestone of collecting 10 years worth of patient-reported data, and YOU have made this possible. Thank you for participating in The Duchenne Registry and helping to strengthen the power of this network! To mark the 10th anniversary of The Duchenne Registry, PPMD has implemented not only a new name, but also new features and tools to help enhance your experience. Read our blog to learn more, or login to your Registry account today! 

Your Data at Work

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Recent Human Glossary Link Mutation Publication using Registry Data

Richard Wang, PhD, Stan Nelson, MD and their team of researchers at UCLA published an article in June in the journal Human Mutation that uses data entirely from The Duchenne Registry. They found a correlation between certain deletions and the age at loss of ambulation. In particular, they found that boys with exon 45 deletions and boys with exon 3-7 deletions had a later age at loss of ambulation (they walked longer) than other boys in the Registry. Learn more about this study and other publications using The Duchenne Registry data by clicking the link below. 

Featured Recruitment

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

TDR ItalfarmacoThe givinostat trial is currently recruiting ambulatory boys, ages 6-17 years, in the US, Canada and Europe.

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

TDR NationwideChildrensHospitalThe Nationwide Children's Hospital Glossary Link Carrier Study is now recruiting women who are carriers but do NOT have a child with Duchenne.

 

Please visit the EXPLORE CLINICAL TRIALS section of the PPMD website to view all trials in a concise table. You can easily sort each column to see the trials most applicable to you or your child. You can also login to your Registry account to use the Antidote Trial Finder Tool.

 

TDR promo DecodeDuchenne 2018

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

We recently celebrated our 1000th application to the Decode Duchenne program.  Contact us at the numbers below to find out how we can help you!

  

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