PPMD’s Decode Duchenne Program:
What testing is included in the program?
Decode Duchenne includes testing for deletions, duplications and smaller point mutations through next generation sequencing (NGS) of the Duchenne gene.
How long does it take the test results to come back?
NGS results are available in 2 – 3 weeks after the sample is submitted.
What qualifies as a financial barrier to testing?
You are the expert about insurance coverage in your state and your patient’s unique situation. If concern about cost is a barrier to your patient getting genetic testing, Decode Duchenne can help.
Possible situations that could qualify as a financial barrier include, but are not limited to:
- Your patient’s insurance denied genetic testing or excludes genetic testing
- Your patient would still owe a deductible or co-pay they cannot afford, even though insurance will cover the test
- Your patient does not have insurance
- Your patient has Medicare or another policy that does not permit prior authorizations
- Your patient has a longstanding diagnosis but never had genetic testing or needs repeat testing, which insurance would consider not medically necessary
Does my patient need an insurance denial to use Decode Duchenne?
No we do not require proof of insurance denial.
My patient needs re-testing. Can they use Decode Duchenne?
Absolutely, simply submit an application as you would for any other patient.
What if my patient can’t afford blood draw or shipping costs?
Let us help! We can send specimen shipping kits with return shipping labels and can also reimburse patients for bills they receive for the blood draw. Simply contact the Decode Duchenne team to request these services.
What sample should I send: whole blood or saliva?
Samples accepted include:
- Blood in EDTA (purple top)
- Infants (<2 years): 2-3 ml
- Children (>2 years): 3-5 ml
- Older children & Adults: 5-10ml
- If shipping the same day, store at ambient temperature, if storing overnight or more please refrigerate
- Saliva collected with a PerkinElmer Genetics saliva swab kit only, store at ambient temperature
Dried Blood Spot (DBS)
- Blood collected with a PerkinElmer Genetics DBS kit only, store at ambient temperature
Contact us if you are concerned about being able to obtain a blood sample for your patient.
Where do I get the test requisition?
A Decode Duchenne team member will send you the requisition once your patient’s application is received. Requisitions are typically sent same business day, but if you have a patient in clinic who needs testing, feel free to call for immediate approval or obtain a sample and hold while the application is in process.
Does Decode Duchenne provide free carrier testing?
YES! The Decode Duchenne program can also provide free carrier testing. Review our eligibility guidelines to see if you might qualify.
If you believe you qualify, the first step is to have a provider complete an application on your behalf.
Additionally, we do have access to a reduced carrier testing rates and our certified genetic counselors are available to discuss carrier testing options.
What if my patient isn’t registered on The Duchenne Registry?
While registering for The Duchenne Registry is a valuable way for patients to access research and store their test results, we know that not all patients are able to register at the time of their testing. Rest assured, their applications for Decode Duchenne will still be processed without delay.
Who do I call if I have questions?
Decode Duchenne is administered by Parent Project Muscular Dystrophy and The Duchenne Registry. Decode Duchenne is sponsored by Sarepta Therapeutics and PTC Therapeutics. Click here to review PPMD’s policy on corporate support.