UK ITP Registries
The ITP Support Association has been a proud supporter of the UK ITP Registries since their inception.
In 2020 we continued this support with grants of £22,000 for the Adult ITP Registry at Barts Health NHS Trust and £22,000 for the Childhood ITP Registry at the Royal Manchester Children’s Hospital.
In the last five years the ITP Support Association has supported these ITP Registries with over £200,000 of funding, which has enabled them to continue their ITP research.
If you would like to support the ITP Support Associations Research Fund you can donate by going to our Virgin Money Giving Donate page.
UK Adult ITP Registry Update September 2020
It has been a busy year at the UK adult ITP registry! We are delighted to let everyone know that 2019 was our best recruitment year on record since the study began in 2007 with 567 patients recruited. As of the 31st August 2020, we have recruited a total of 4127 patients, and we have over 70 active hospitals recruiting patients. The global pandemic caused by COVID-19 has inevitably had an effect on recruitment numbers in 2020 and with lockdown measures restricting movement for staff and patients alike, we have made some changes in how we see and recruit patients in the Registry. As a result, sites will be able to consent patients remotely via telephone and postal communication. Our pregnancy registry continues to recruit well under the direction of Dr Sue Robinson from Guys and St Thomas’ Hospital, an update of which was prepared for the British Society for Haematology meeting.
We have continued to work on studies understanding the treatment outcomes in patients with ITP. We have looked at the outcomes after splenectomy in patients with ITP, including which patients respond and potential complications. It shows that in the UK we perform far fewer splenectomies for ITP and most patients now receive medical treatments rather than surgery. The data will be presented virtually at the British Society for Haematology later this year. Our collaboration with Quentin Hill from Leeds Hospital is making good progress and will help us understand if there are influences on the response to treatment with IVIG or rituximab. We are looking forward to working with others.
Visit our website https://www.qmul.ac.uk/itpregistry/ for more information, latest updates and publications. As always, we thank the patients and the ITP patient support association for their support and involvement! We look forward to updating more at the support association patient day in October.
Abstracts
Map to show the hospitals who are active in recruiting patients and contributing to the data in the UK Adult ITP Registry.
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The list of over 70 active Hospitals who are recruiting patients and contributing to the data collection for the Adult ITP Registry |
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The Royal London Hospital Hammersmith Hospital University College Hospital Royal Victoria Infirmary Sunderland Royal Hospital Kent and Canterbury Hospital Northwick Park Hospital Glasgow Royal Infirmary The Royal Liverpool University Hospital Queen Alexandra Hospital Churchill Hospital Royal Cornwall Hospital Leicester Royal Infirmary St James's University Hospital North Tyneside General Hospital Princess Royal University Hospital Harrogate District Hospital Worcestershire Royal Hospital Nevill Hall Hospital University Hospital of Wales West Middlesex University Hospital Pilgrim Hospital Royal Gwent Hospital Guy's Hospital Poole Hospital Manchester Royal Infirmary Bristol Haematology and Oncology Centre Hereford County Hospital Colchester Hospital Bedford Hospital: Accident & Emergency Department Royal Devon and Exeter Hospital (Wonford) Basildon University Hospital Accident and Emergency St George’s Hospital A&E Department Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust Grantham and District Hospital Prince Charles Hospital St Richard's Hospital University Hospital Lewisham |
Kettering General Hospital Ealing Hospital Epsom and St Helier University Hospitals University Hospital Southampton NHS Foundation Trust King's College Hospital Derriford Hospital King's Mill Hospital Worthing Hospital Burton Hospitals NHS Foundation Trust Royal Shrewsbury Hospital South Tyneside District Hospital Southmead Hospital Royal Derby Hospital Medway Maritime Hospital Birmingham Heartlands Hospital Gloucestershire Royal Hospital Birmingham Women's Hospital Kingston Hospital Addenbrooke's Hospital Warwick Hospital Chesterfield Royal Hospital York Hospital Airedale General Hospital Russell’s Hall Hospital Wythenshawe Hospital Queen Elizabeth Hospital (Gateshead) Nottingham City Hospital N H S Norfolk & Norwich University Hospital NHS Foundation Trust Bradford Teaching Hospitals NHS Foundation Trust Royal Victoria Infirmary Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust Scarborough General Hospital Newham University Hospital Queen's Hospital Cumberland Infirmary |
The ITP Childhood Registry
This year the ITP Childhood Registry had two abstracts accepted to BSH. The first abstract examined the impact of therapy on quality of life during the initial 6 weeks after ITP diagnosis. Results demonstrate improving HRQOL in all groups over the 6-week study period with greatest improvement in those receiving immunoglobulin. The second abstract reviews treatment trends for those children with persistent ITP after 6 months and ongoing severe thrombocytopenia, this study demonstrates a more rapid move to second line therapy and increasing uptake of TPO-RA. It does however demonstrate that the majority of children are not receiving therapy.
The planned student projects were cancelled due to COVID. It is still the intention that these projects will take place but at a later date. Project 1 will examine the outcome of children with moderate or mucosal bleeding in comparison to the TIKI (IVIG) study and project 2 will examine markers of alternative thrombocytopenia diagnosis.
Outside of the registry there are two upcoming clinical trials for children with persistent ITP, details of which will be shared once we have the relevant permissions.
Abstracts
September 2020 Update