Update on the UK Adult ITP Registry
by Haroon Miah, Research Coordinator / Data Manager at the Royal London Hospital
For more information visit the new UK Adult ITP Registry website at https://www.qmul.ac.uk/itpregistry/
In the last year we have added 19 new sites to the 74 hospitals that already report their new ITP patients to the Registry. This is 69% of the acute non-specialist Trusts in the UK (based on 135 acute non-specialist Trusts in the UK). We have now recruited over 3780 patients and have clinical information on virtually all and DNA stored on over half. It has been estimated that over 2,000 patients are needed in any Registry to detect worthwhile trends and in a disease as diverse as ITP this may be more. We have however published some very important drug studies, as mentioned in the June edition of the Platelet. We have also in the past shown the major impact that steroid treatment has on patients and identified the increased risk of thrombosis in ITP despite the low platelet counts. We were also one of the first to show the impact of fatigue on quality of life in a study we performed in conjunction with the ITP Association.
Over the last 12 months we have undertaken some exciting studies and research into treatments used for ITP. The first of these was a report on the treatment patterns being used for ITP in the UK over the last 25-30 years. We have presented this in UK and European medical meetings and also at the UK ITP Assembly in May, organised by Dr Nichola Cooper. This generated a lot of discussion, in particular around how the treatment patterns have changed, using more medications such as eltrombopag and romiplostim with fewer splenectomies and the increased use of drugs such as Mycophenolate. In addition, we have also analysed rituximab treatment use in the UK, looking at high and low dose treatment in over 300 patients. These results will be published shortly but we have also presented the results at UK and international meetings. We are also collaborating on a laboratory project with Dr Quentin Hill at Leeds looking at what factors may affect response to treatment with rituximab and intravenous immunoglobulin.
We are very grateful for the ongoing support from the ITP Support Association for the Adult ITP Registry. It has allowed us to continue to develop and expand the Registry, add the Pregnancy ITP Registry, with Dr Robinson from Guys and St Thomas’, and continue to undertake research into the causes of ITP and outcomes of our patients in the long term. Without the patient involvement and the support from the Association we would not be able to do this – so THANK YOU!