ITP Registries - September 2020 update

 

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

Primary immune thrombocytopenia (ITP) treated with romiplostim in routine clinical practice: retrospective study from the United Kingdom ITP Registry

Splenectomy in Immune Thombocytopenia- Do changing treatment patterns for ITP affect outcomes - Data from the UK ITP Registry


Adult ITP Registry Patient Recruitment Growth

Map to show the hospitals who are active in recruiting patients and contributing to the data in the UK Adult ITP Registry. 

The list of over 70 active Hospitals who are recruiting patients and contributing to the data collection for the Adult ITP Registry 

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

BSH 2020-182 - Analysis of Second Line Treatments for Children with Persistent or Chronic Primary Immune Thrombocytopenia (ITP) in the UK.

BSH2020-416 - BSH2020-416 - Heath-related quality of life following initial diagnosis of childhood immune thrombocytopenia.

September 2020 Update