Information for the public

NICE has said that the Genedrive MT‑RNR1 ID Kit can be used to test for a change in the genetic code (a genetic variant) that means some babies can go deaf if they’re given a type of antibiotic called an aminoglycoside. The test means they can be given a different type of antibiotic that works just as well but will not cause hearing loss.

If your baby tests positive for the genetic change, doctors should talk to you after treatment about what it means for your baby and your family, and offer you support.

Newborn babies can get life-threatening bacterial infections, which need to be treated with antibiotics within 1 hour. Gentamicin, an aminoglycoside antibiotic, is the first choice in these situations. Genedrive can give results quickly, so babies with the genetic change can have the emergency treatment they need in time and without risking hearing loss.

The NHS is collecting more evidence on how using this test affects how long it takes for a baby to get the antibiotics they need, what antibiotics are prescribed, and the technical performance and accuracy of the test.

You might be asked if details of your treatment can be collected for further evidence. You can ask your healthcare professional for more information about being involved and how your information will be stored and used.

Questions to think about

  • What do the test results mean for my baby in the longer term?
  • Are there any risks or side effects? How likely are they?
  • How long will the test take?
  • How do I get my baby’s test results? Will there be a follow-up appointment?

Information and support

These organisations can give you advice and support:

You can also get support from your local Healthwatch.

NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.

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