Biogen, PTC and more back BioMarin's genetic seizure testing effort for kids

Genetic testing for children with epilepsy gets a boost from five more pharma sponsors in the Behind the Seizure program. (Pixabay)

Five more pharma companies have joined founders BioMarin and Invitae in sponsoring free genetic testing for children. The program, Behind the Seizure, also expanded the inclusion age range to include those up to eight years old who have had an unprovoked seizure event.

Children and their families can qualify for a free 180-gene panel test from Invitae through the pharma sponsorships, now split between eight companies. Biogen, Encoded Therapeutics, Neurogene, Praxis Precision Medicines and PTC Therapeutics joined this month, while Stoke Therapeutics and Xenon Pharmaceuticals joined inaugural partner BioMarin last spring.

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Several thousand children have now been tested since the program began in 2017. By mid-2018, when Stoke and Xenon joined, the companies had administered around 200 genetic panel tests, but the number has grown quickly.

The pharma-sponsored program represents a shift for genetic testing, said Robert Nussbaum, chief medical officer at Invitae.

“I see this as an absolute paradigm shift in genetics. It’s a partnership that helps everybody,” he said. “Because it’s being sponsored, the physician essentially has no hassles to get the test done. There’s no insurance billing, no co-pay for the patient. It is a seamless and effortless channel to get the genetic testing done.”

While Behind the Seizure has grown significantly in the past year, Invitae would like to see it expanded even further with more partners. More individual genetic information is valuable to patients as well as to the overall healthcare system and drug discovery, Nussbaum said.

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“What expansion of the program will mean is there are more companies with more therapies for patients who currently don’t have therapies. I see this as a gauge of how much involvement biopharma and small biotech companies have to try to develop molecularly targeted therapies for rare disorders,” he said.