The Duchenne Registry News, Fall 2018

 
Race to End Duchenne
FALL 2018   
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The Duchenne Outcomes Research Interchange

Last month on World Duchenne Awareness Day, PPMD annouced their plan to launch a patient- and physician-reported outcomes data warehouse - the Duchenne Outcomes Research Interchange (the Interchange) - which will combine data from The Duchenne Registry with clinician reported post-marketing surveillance data provided by industry partners with approved therapies. The Interchange is scheduled to launch in 2019 and will provide critical informations to clinicians, sponsors, payers, regulators, and the patients and families who participate in The Duchenne Registry.  We are delighted to partner with Sarepta Therapeutics as our initial partner.

 

Your Data at Work

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You Have the Power to Make a Difference

Please remember to update the Medical Surveys in your Registry account. When you update your account, you are strengthening the power of a 10-year-old network of patient-powered data that will be used to improve care and advance research for Duchenne. You become a citizen scientist by contributing to real scientific research, without ever leaving your home! In case you missed it, read our blog about the journal article published in the September issue of Human Glossary Link Mutation that used The Duchenne Registry data - YOUR data.

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 WaveThe WVE-210201 trial is currently recruiting boys, ages 5-18 years, who are amenable to exon 51 skipping.

TDR CapricorThe CAP-1002 (HOPE-2) trial is currently recruiting ambulatory and non-ambulatory boys with Duchenne, ages 10 years and older. 

TDR CatabasisThe edasalonexent (PolarisDMD) trial is now recruiting ambulatory boys with Duchenne between 4-7 years old.

 

The UC Davis Neuromuscular Research Center is seeking teens and adults with Duchenne and caregivers for an online survey about movement and daily living abilities. The survey is called the Duchenne Muscular Dystrophy Life-Time Mobility Scale (DMD-LMS). Learn more and participate today!

 

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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