UK Adult and PREGNANCY ITP Registry – Updates – September 2021

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UK Adult ITP Registry – Update – September 2021

It has been another busy year for the UK adult ITP registry. The COVID-19 pandemic and lockdown restrictions meant that many of our ITP patients, clinicians and staff had to restrict their movement and stay or work from home throughout 2020 and into 2021. We therefore updated our study protocol to enable sites to consent patients remotely, via telephone and post (i.e. not requiring to see the patient in hospital/clinic) with a positive impact on recruitment. Our latest adult recruitment figure as of 9th August 2021 is 4,425 patients. In addition to this, 50 patients have been recruited to the pregnancy arm of the registry since it was created in August 2018.

Dr Vickie McDonald and Dr Sue Robinson have presented updates on both the adult and pregnancy registries helping to understand the frequency, treatments and outcomes of patients with ITP throughout all stages of life (this included the ITP Support Association Virtual Patient Convention and ITP Virtual Update Day which both took place in May 2021). Our projects have included the long term outcomes from splenectomy, the responses to different rituximab doses and the responses to mycophenolate treatment. An early review of the pregnancy data is helping us to understand how pregnancy impacts ITP and whether ITP impacts how women deliver.

In the coming months, we are revising the registry protocol further to incorporate ITP after vaccination as an inclusion criteria, and then extend the inclusion criteria to include patients with secondary ITP. This will be an exciting development will give us the opportunity to study the causes and outcomes in these patients in more detail.

We would like to extend our thanks to all our patients and site teams without whose hard work the registry would not survive. We would also like to thank in particular Dr Quentin Hill, Dr Nicky Cooper, Dr Charlotte Bradbury and Professor Mike Makris for their help and support over the las 12 months. And of course we cannot end without a huge thanks to the ITP support association for our grant and for their forward thinking focus on improving care for patients with ITP.

If you have any questions about our registries or would be interested in participating, please do not hesitate to email us on This email address is being protected from spambots. You need JavaScript enabled to view it.. You can stay up to date on our latest news and developments and key staff by visiting our website on https://www.qmul.ac.uk/itpregistry/ and following us on our official Twitter page on https://twitter.com/ukitpr.

ITP PREGNANCY REGISTRY UPDATES

42 women have been recruited to the pregnancy arm of the UK Adult ITP Registry (see graph below for breakdown of annual recruitment) since the arm was added in August 2018. A review of the data most common data resolution queries in April 2021 found that the top 10 most incomplete forms in the pregnancy registry are:

Pregnancy Registration Details (e.g. date of last period, EDD etc.)
Problems In Previous Pregnancies
Anthropometric and Lifestyle Information (e.g. booking weight, history of smoking and alcohol use)
Bleeding Events During Pregnancy
ITP Treatments During Pregnancy (e.g. dosing, indication to treat etc.)
Details Of Delivery and Anaesthesia Method At Delivery
Haematological Values During Pregnancy
Coagulation Results At Delivery
Infant Details, Morbidity, Treatments and Platelet Counts
Information on Breast Feeding It is really important we have complete data to make meaningful conclusions.

UKITPRegistryMap2021

Dr Sue Robinson (Co PI) presented analysis of data gathered over the last few years at the ITP Assembly held in May this year and demonstrated its usefulness in providing invaluable insight on the management and outcomes of patients with ITP in pregnancy This can be found on the ITPSA’s YouTube channel.

COVID-19 INDUCED ITP COMMUNICATIONS RECENT PRESENTATIONS

In May this year, Hartley Taylor hosted the ITP Updates day and the ITP Support Association held their annual convention – both via virtual formats.

From the UK Adult ITP Registry team, Dr McDonald, Dr Robinson, Dr Provan and Prof Newland had dedicated slots at both events, discussing a range of topics, including ‘What is the place of splenectomy in ITP’, ‘What is the place of the newer treatments in ITP’, ‘Real World Experience in ITP’ and updates from both the main Adult ITP Registry and the Pregnancy ITP Registry.

We’d like to take this opportunity to thank the ITP Support Association for continuing to support the UK Adult ITP registry, as well as all the sites who are participating in the study.

For a list of all our publications and presentations, please visit our website on:

https://www.qmul.ac.uk/itpregistry/latest-news-events-and-links/publications-and-presentations/

We updated the UK Adult ITP Registry earlier this year to be able to capture COVID-19 data for any patients who may have been infected with COVID-19. This was incorporated in the Comorbidities section of the database; it is a simple dataset capturing information about the severity of COVID-19 infections with fields to also capture if patients have had a COVID-19 vaccine. Now that the Oxford-run snapshot audit of management of ITP in the COVID era has finished, for those that took part, this is a good opportunity to add the cases of ITP who have had COVID into the registry! It is important to note that under the current version of the protocol, patients who have ITP after having a COVID-19 vaccine (no prior confirmation of primary ITP) would not be eligible for the study. However, we are currently working on a substantial protocol amendment that will update the eligibility criteria to include patients who have vaccination induced ITP. We will keep you updated with any new developments in due course.

Keep up to date with the UK Adult Registry

Head over to https://twitter.com/UKITPR and support their Twitter page. They will be using this platform to shine a light on ITP with the latest news/publications and promote any upcoming events. #ITPAware #ITPRegistry!

You can also visit their Website: https://www.qmul.ac.uk/itpregistry/

ITP Registries - September 2020 update

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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 31^st August 2020, we have recruited a total of 4127 patients, and we have over 70 active hospitals recruiting patients.

Update on the UK Adult ITP Registry - Jan 2020

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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.

ITP in Pregnancy Registry

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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

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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.

The Childhood ITP Registry

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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.