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The Childhood ITP Registry
The UK Paediatric ITP Registry intends to gather information on all new cases of ITP in the UK and follow children with persistent (chronic) ITP for up to twenty years. In contrast to other studies we are encouraging recruitment from general paediatricians in local hospitals, rather than just from specialist centres. This approach will be more difficult to organise but should give a true reflection on the severity and outcome of ITP for children in the UK.
The UK registry will work closely with the Intercontinental Childhood ITP Study Group so UK data can be compared to that from other countries. The childhood chronic ITP registry received a final favourable opinion from COREC (central ethics) on 22 March 2006 and the final round of invites to all UK Paediatricians was completed in January 2007. The online database, parent information sheets and information sheets can be accessed via our website at www.uk-itp.org .
The key aims of the Childhood Registry will be as follows:
- Maintaining accurate information on the incidence and outcome of childhood ITP
- Updating national guidelines
- Identifying children at a higher bleeding risk who may benefit from early treatment
- Identifying children at a lower bleeding risk who do not require treatment
- Stimulating scientific research and trials of new agents in childhood ITP