Decode Duchenne provides diagnostic testing for Duchenne and Becker muscular dystrophy. Decode Duchenne is a collaborative partnership between Parent Project Muscular Dystrophy (PPMD), industry partners NS Pharma, Sarepta Therapeutics, PTC Therapeutics and Vertex Pharmaceuticals, and PerkinElmer Genomics.
Since 2013, PPMD has been proud to offer free genetic testing, counseling support, and education through Decode Duchenne. Decode Duchenne offers free genetic testing to people in the Becker and Duchenne muscular dystrophy community who otherwise would be unable to access genetic testing. The Decode Duchenne diagnostic program offers Next Generation Sequencing (NGS) of the DMD gene.
To learn more about Duchenne and Becker muscular dystrophy, please click here. You can also access free genetic counseling support for Duchenne and Becker muscular dystrophy at PPMD at 888-520-8675 (option 1) or emailing email@example.com.
For Health Care Professionals already familiar with Duchenne and Becker muscular dystrophy, feel free to use the links below to order a kit or submit a sample.
The Decode Duchenne program is for individuals with:
A known or suspected diagnosis of Duchenne or Becker muscular dystrophy* or an elevated CK level.
If you suspect Duchenne or Becker muscular dystrophy due to a positive family history, please call 888-520-8675 (option 1) or email firstname.lastname@example.org to ensure appropriate testing is ordered. Decode Duchenne may be unable to provide payment for incorrectly ordered genetic tests.
*This portal is not appropriate for carrier testing. If you are interested in carrier testing for a patient, please click here.
Obtain a sample for testing from the patient using one of the provided PerkinElmer Genomics test kits. If you do not have a kit available in your office, please contact us here and we can have one sent out to your office.
Ensure that the patient sample is labeled with the patient name and date of birth
Blood, saliva or DBS samples can be accepted
Step-by-step instructions for collecting a saliva sample can be found here
Step-by-step instructions for collecting a DBS sample can be found here
Package the patient sample, informed consent form, and test requisition form back into the test kit and utilize the included pre-paid shipping label to return the kit to PerkinElmer Genomics for processing.
As a patient’s clinical presentation is an essential part of fully interpreting genetic test results, we ask that you kindly include any applicable medical records or clinical notes with the sample at the time of test submission.
Once PerkinElmer receives the sample, results are sent through PerkinElmer Genomics to the ordering physician typically within 14-21 days. You will receive a phone call to report abnormal findings, with a written report to follow.