Thrombotic Thrombocytopenic Purpura (TTP) Registry

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Steering Committee Chair: Dr Solomon Cohney
Click here for full Steering Committee details.

What it TTP?

Understanding the name goes a long way in explaining this rare condition.  Thrombotic, is a term used for blood clots which are often observed in the small blood vessels of patients with TTP and can cause damage to organs such as the kidneys, brain and heart.  Platelets are the smallest cells that normally circulate in the blood stream.  They serve a very important role, acting as plugs to stop bleeding.  A decrease in the number of circulating platelets is called thrombocytopenia and may result in bleeding.  In TTP the platelets are used up in the abnormal clots that occur throughout the body, leaving too few to do the work of preventing bleeding elsewhere.  Purpura is a term used to describe the bruises and bleeding spots resulting from this shortage of platelets.

Currently there is no consensus regarding the incidence of TTP in Australia, its optimal management, clinical outcome, or the impact of complications, nor standardisation of laboratory assessments.  Lack of data hampers the design of clinical interventional studies and laboratory testing.

The TTP Registry recruits patients through treating clinicians at multiple sites across Australia, collects data via a specifically designed web-based data collection form and aims to:
 

  • Better define the incidence, natural history and clinical outcome of TTP.
  • Provide information on the range of therapeutic strategies being employed in the treatment of TTP patients.
  • Explore factors influencing clinical outcomes.
  • Better define optimal management of TTP patients.
  • Inform and inspire future research, and coordinate future national research.

 

If you would like more information or are interested in the participating in the TTP Registry please click here