Home Phe Monitor

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    • Home Phe Monitor

      Hi folks,
      a presenter at the E.S. PKU Conference in October 2015 told about a home phe monitor which should be in development by BioMarin. You'll find a picture of the slide (in poor quality) attached to this thread. Some month later, I spoke to my doctor yesterday and asked him about an update on the home phe monitor. Based on an information by a collegue, my doctor told me that the home phe monitor kit is in use in the UK. I looked for it in the web but did not really found any helpful articles on that.
      There is an old thread in this forum with little updates (see Home Phe Monitoring Kit?) saying that the kit is in development and testing (others says that the development has been stopped).

      So: has anyone any updates to the home phe monitor or any personal experiences with the kit?

      Thanks in advance!

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    • Hi,
      I've not heard of a working home tool yet. It would be interesting how it is working and how precise it is.
      I just know a group in Zurich which is working on developing such a tool. But it is quite difficult, since this tool has to detect a single amino acid and not just a whole molecule (like in diabetes).
    • Got some answers on my facebook post in the group "PKU Friendly" (see facebook.com/groups/PKUFriendly/permalink/953417724713931/ ).

      Denise Frater New wrote:

      Denise Frater New The last I heard they couldn't get it accurate enough and stopped!

      Hannah Ruth Melissa Edwards wrote:

      hey are not here in UK yet, been waiting years. I think they are still working on it, hopefully it wont be too long a wait now. I'm going to the pku conference in march there will probably be more info on them there.

      Kevin Alexander wrote:

      The Home PHE Monitor is part of a research project being conducted by the National PKU Alliance in the US. Last I heard, progress was being made but nothing is available yet (that was last year). FYI, there was a similar project sponsored by BioMarin a few years ago that wasn't accurate enough and it that project was terminated. But in the last 2 years the NPKUA started the new research campaign, and that is the one now making progress.

      Kevin Alexander wrote:

      When I posted the other day, I completely forgot about this video I produced from the 2014 NPKUA Conference... This is the info I was referencing: http://www.pkulife.tv/.../video-update-on-the-home-phe.../
    • At the moment 3 companies are working on a home monitoring kit and all are in various stages of development. Some are conceptual. It will be a few years before one will be available in my opinion.
      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.