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Survey: Would you like faster newborn screening results?

StephanieAtQuantamerixStephanieAtQuantamerix
in 3rd Trimester
Hi everyone,

I'm a graduate student at MIT and Harvard Medical School. A classmate and I are developing an on-site newborn screening test for detecting easily treatable diseases. The doctor would perform the test and discuss results with the parents before the newborn leaves the hospital.
 
While newborn screening is mandated across the country, the current process requires sending off samples of the newborn's blood to a lab for analysis. By the time parents hear back about the results, it has been days or weeks since the sample was collected. Sometimes parents will not hear back at all if the results are normal.

We would like to understand how much new or expecting parents would value our product, which would let parents know key results before leaving the hospital with their newborn. We hope you can complete a brief survey, which is anonymous and takes up to five minutes, about the proposed test.
 

Many thanks!
Stephanie
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Re: Survey: Would you like faster newborn screening results?

  • StephanieAtQuantamerixStephanieAtQuantamerix

    Thanks for the info, theresat858. We've had a variety of responses, and have seen parents waiting on average 1-2 weeks, so 24 hours seems to be on the super-fast end for turnaround times. As you mentioned, perhaps this varies by state. It's also possible that it varies by hospital, or even your pediatrician. Sounds like you're getting great care, and we're happy to hear that it's possible for results to be reported that quickly with the current system.

    Best,

    Stephanie 

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  • happyhooplahappyhoopla member
    Which screening are you refering to? Metabolic panels, glucose, bilirubin? The only one that I can see taking a few weeks would be the metabolic panel and as a NICU RN, I've seen babies die before the results came back. It would be wonderful to have at least an earlier screening process.
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker Loss #1 (missed miscarriage) 14 weeks Loss #2 (missed miscarriage) 10 weeks Loss #3 (chemical pregnancy) Loss #4 (chemical pregnancy) Loss #5 (chemical pregnancy)
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  • StephanieAtQuantamerixStephanieAtQuantamerix

    Hi happyhoopla,

    Yes, we're referring to metabolic panels, specifically inborn errors of metabolism, such as congenital hypothyroidism, phenylketonuria (PKU), galactosemia, G6PD deficiency.

    Stephanie 

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  • ScreenbabiesScreenbabies
    Hi. I am the President of the Save Babies Through Screening Foundation. We are the only national non profit solely dedicated to newborn screening. While your work sounds very interesting I am wondering where you have come across results that have taken weeks to receive? The average turn around time is 5 or 6 days, or even sooner. It is very concerning to hear that results could be taking weeks as early detection is vitally important if a baby has a disorder detectable through newborn screening. Newborn screening education is extremely important and should be the first step. We would be interested in connecting and learning more about your project. 
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  • StephanieAtQuantamerixStephanieAtQuantamerix

    Many thanks for the responses so far. We're trying to get a few more by the end of this week. If you have a few minutes to share your thoughts, please help us out. The survey takes less than 5 minutes. We really appreciate it!

    Survey link

    Stephanie

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