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

 

 

Update on the UK Adult ITP Registry - Jan 2020

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. 

Read more ...

ITP in Pregnancy Registry

ITP in Pregnancy Registry

The ITP Support Association is sole funder of the ITP Childhood Registry and part funder of the ITP Adult Registry. The data collected by these registries has increased the understanding of ITP resulting in improved management practices. Dr Sue Robinson of Guys and St Thomas's Hospital in London is about to set up a new ITP in Pregnancy Registry which the ITP Support Association has agreed to fund. It will run in conjunction with the Adult ITP Registry, and it is hoped that it will identify the women who need lots of additional care and those that just need a gentle eye. Dr Robinson explained "Pregnancy in women with ITP accounts for almost 1 in a 1000 pregnancies in the UK. Pregnancy is a precious time, health care professionals endeavour to provide patient focused care and where possible we must avoid over medicalising pregnancy in women with ITP. How doctors and midwives look after women with ITP in pregnancy has changed over time. To define best practice and determine exactly when additional treatment is really required data collection regarding expectant mothers with ITP women and their newborns is essential. The planned addition of an ITP in Pregnancy Registry to the Adult ITP registry is an opportunity not to be missed!"

The UK Adult ITP Registry - early history

The UK Adult ITP Registry

For more information visit the new UK Adult ITP Registry website at https://www.qmul.ac.uk/itpregistry/

In any disease it is important to collect data in order to predict the outcome of the disease, evaluate treatments etc, and until the ITP Support Association funded the UK ITP Adult Registry there was no such data collection in the UK, although a few short studies on newly diagnosed patients had been done. As many members of the ITP Support Association have suffered chronic ITP for many years (over 50 years for a few cases!) the Association felt that it was important that they too should be involved in such a study, and pressed for the UK Registry to be retrospective and all inclusive.

In 2001 The Towler family very generously funded a pilot year of the ITP Registry in memory of Carol Towler.  Dr. Provan explained the importance of the registry in the December 2002 edition of The Platelet:

In 2003 we obtained approval from the London Multicentre Research Ethics Committee (MREC) to set up a registry for adult patients with ITR So what? you may ask. Let me explain the purpose of the registry.

Read more ...

The Childhood ITP Registry

The Childhood ITP Registry

The ITP Support Association has been sole funder of the UK childhood ITP registry since its inception in 2005.

The UK Paediatric ITP Registry by Dr. John Grainger

Background

Children with ITP in the UK have not been systematically studied in large numbers. Many may not require any specific treatment to raise the platelet count – because they have few symptoms and usually recover spontaneously within a few weeks. However, a significant proportion (about 20%) may not spontaneously recover within six months, these have chronic ITP. Children with chronic ITP may require treatment with drugs (steroids and intravenous immunoglobulin) or surgery (splenectomy) because their risk of serious bleeding is perceived to be greater.
Because no systematic study has taken place it is not clear if there are different subgroups who may respond differently to interventional therapy, or groups who are at particular risk of bleeding complications. The research aims to establish a UK database, which is linked to the international registry initiated by the intercontinental ITP study group (ICIS). Individuals with ITP will be followed over several years enabling us to obtain a analysis of remission rate, bleeding frequency and need for therapy.
As well as giving us more information on the natural course of chronic ITP the database is also intended to identify individuals whom may teach us more about ITP. These individuals will be approached to participate in additional studies. It is expected that the information gathered by the database will be stimulate further scientific research aimed to identify those children whom would benefit from early treatment and those children whom are best served by the avoidance of therapy.

How the Registry will work

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 are 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

An abstract of Dr Grainger's article based on results of this registry was published in August 2013 by the BMJ's Archives of Disease in Childhood. The full text gives an acknowledgement to the ITP Support Association for funding this work.

Dr. John Grainger

Please help us fund more ITP research projects by making a donation today

or you can become a Member of the ITP Support Association, click the link below:

Join us