Read all the latest news and events relating to the Paediatric ITP Working Party and the ITP registry.
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December was the American Society of Haematology (ASH) meeting. The meeting this year was held in Orlando and as a special treat my family and I travelled over a few days early for a break before the work began.
The week kicked off with a two day meet with Victor Blanchette and his Canadian group along with our international colleagues to review the progress on the Quality of Life validation study. Everyone has worked very hard to test the "translated" questionnaires out on new patients with ITP.
Here in Manchester the initial (translation) phase of the project should be completed in January and we hope to start using the questionnaire from February. I am pleased to announce a collaboration along the M62 with my colleagues in Leeds and Liverpool for this study which will recruit patients with stable chronic ITP as well as new children diagnosed with ITP in the last 14 days.
The main meeting then started with a review of the American ITP Guidelines which should lead to a new set of guidelines to be developed. My colleague, Paula Bolton-Maggs, was the UK representative on the panel and it was reassuring to see the majority of Americans now agreeing with the UK approach of watching rather than treating.
On the final day of the meeting a packed room listened to the updates on three drugs designed to increase the platelet count. All three (Eltramobag, AMG 531 and YM477) sound very promising with minimal side effects observed although there remains a concern about bone marrow fibrosis and cataract formation. The downside is that these drugs are not a cure as platelet counts quickly dropped to baseline (and occasionally lower) upon discontinuation of the drug. The drugs will obviously be expensive so when best to use is still not clear. On a final note that although many adult patients have been tested there have been no paediatric recipients to date.
The UK registry is now live. The final set of information sheets went out to paediatricians at the beginning of January. In total we have sent out invitations to 279 UK centres.
Centres in the North West region were the first to be invited and we currently have 15 out of 29 centres going through approval. Alarmingly one centre replied to say that they never have ITP patients. Another 30 centres across the UK are also with local ethics. Further reminders and invites are going out soon but we would encourage parents to ask their local treatment centre if they are registering patients.
A new registry to follow newborn children born to mother's with ITP has been proposed by the intercontinental group. We intend to contribute to this when details have been finalised.
As mentioned above, the quality of life study is now entering the final validation process by testing on new and chronic patients in Manchester, Leeds and Liverpool. Nationally we hope to launch this as part of registry documentation from 2008.
We also hope to contribute to Drew Provan's molecular studies from 2008. Paediatric studies with Eltramobag are due end of 2007. Whether UK children will be eligible is not yet clear.
Update 17/01/2007 by John Grainger.
Dr Grainger is a medical advisor for the ITP Support Association and writes for "The Platelet"
The childhood ITP registry received a final favourable opinion from COREC (central ethics) on 22 March 2006. The ethics committee agreed with our proposal that local sites do not need further local ethical approval.
The online database is currently being developed and should be online for input by NHS staff throughout the UK by September. NHS professionals can access the UK Paediatric ITP database form here.
In Manchester we have recruited eight patients all of whom consented for data to be shared with the PARC intercontinental database in addition to the UK database. Nationally we expect to recruit 400 patients per year.