September 9, 2019 / Care,Clinical Trials,Community,Research

Decode Duchenne: Five Years of Free Genetic Testing

For over five years, PPMD has been proud to offer free genetic testing, counseling support and education through Decode Duchenne. This program is collaborative partnership between PPMD, industry partners Sarepta Therapeutics and PTC Therapeutics and PerkinElmer Genomics.

Since launching in 2013, Decode Duchenne has provided:

  • Free genetic testing and counseling support to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing
  • Over 1,000 participants with diagnostic confirmation of Duchenne or Becker muscular dystrophy
  • Over 100 women with carrier testing since 2018

Decode Duchenne was one of the first free genetic testing programs, and it remains the only free genetic testing program focused solely on Duchenne and Becker muscular dystrophy. In fact, Decode Duchenne’s success has led to the development of similar programs in other neurological diseases – and we couldn’t be more proud!

How It Works

Our process is simple: complete our application and receive all the information and paperwork needed to have genetic testing performed through our designated laboratory, PerkinElmer Genomics.

Our genetic testing includes:

  • full analysis of the Duchenne gene through next generation sequencing,
  • targeted testing,
  • or repeat testing for those with incomplete testing.

Our program can also provide whole blood, saliva swab, or dried blood spot specimen shipping kits. These options make it easy for both providers and families.

Decode Duchenne also has two certified genetic counselors who are available to providers and families at any point during the testing process. Having this Duchenne and Becker expertise readily available offers families information and support beyond just test results.

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