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.
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.
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:
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/