New International ITP Register; Founded in Australia

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On the 5th of March 2012, a Media Release was sent out to announce the opening of the first International Register for ITP (Idiopathic Thrombocytopenic Purpura) patients.  Australians will be proud to learn that it was started by the Australian Professor Beng Chong from St George Hospital.  While there is a lot of information being circulated amoung medical professionals, this Register will be the first official link between haematologists around the world.

 The registry has attracted interest from renowned haematologists worldwide.

itp international register
Full Media Release Here

Registry Project Manager, Sarah Davidson, said the registry would enable clinicians to build a complete picture of ITP and collect data from many ethnic groups across the world.  “There is increasing evidence that the disease and its response to drug treatments could be very different among patients with different ethnic backgrounds,” Ms Davidson said.

In Australia, with such a widely spread out population, patients with itp pop up in small numbers, spread out from each other.  Collecting data where ever possible will help to finally build a comprehensive and accurite portrait of the disease.  Professor Chong stated that “There is a lack of necessary data concerning the epidemiology, diagnosis and treatments of ITP, which is needed to improve patient management and healthcare planning”.

The registry has attracted interest from renowned haematologists worldwide, including those from Japan, Korea, India, China, Singapore, Turkey, Israel and Brazil.

The registry is open to recruitment at St George Hospital and is taking on patients newly diagnosed with itp.  If you wish to be a part of the study or would like more information contact Sarah Davidson, Registry Project Manager on 9113 2446.

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

5 thoughts on “New International ITP Register; Founded in Australia

  1. Marion.Hass@gmx.de'
    Marion HASS says:

    Hallo from Hamburg, Germany,
    I am the founder of an ITP group at Germany, Switzerland, Austria, etc. we have a lot of new ITP patients. But our language is German.
    Pls send me your info material, so I can circulate it in the group.
    Best regards
    Marion HASS

    • Meg says:

      Hallo, great to hear from you. And I hope all is going well in Germany – Im afraid I don’t have any material to circulate. Everything is already available on the site as you see it. Please have a look around and let me know if you need any help finding something. ALso, if there is something you are interested in, let me know.

  2. Pingback: 31 Facts You Might Not Know About ITP

  3. reynaames@gmail.com'
    Ryan says:

    Hi there,
    I have just been diagnosed with ITP and am now on the register. It is kind of tricky to get on as your diagnosis and treatment need to be very precise. I hope it helps others though. Anyone else out there ended up on the register?

  4. scott.a.ellis@bigpond.com'
    Scott Ellis says:

    Wow wow wow, great site Meg. I was diagnosed with a low count about 18 months ago and didn’t take it serious, just put it down to having a very bad year with several bugs, I’m usually very active and healthy as I near the big 50. I was diagnosed with ITP about 12 months ago (yes took a bit to get to the doctor). I’m Australian and have moved to Hong Kong at the start of this year, expect to be here for about 5 years. Its all been a bit of a shock but lifes short so I plan to work with it. Just wanted to say thanks for the site, it’s the most comprehensive detail I have read yet, I tripped over this by accident and have now signed up. Thanks again, keep up the great work and I look forward to more updates 🙂

    Scottie

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