A survey of forum members approach to the use of thrombopoietin receptor agonists (TPO-RA), led by Dr Jecko Thachil, has been published in the current issue of the British Journal of Haematology https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjh.14395. It is hoped that this will provide some guidance to clinicians managing problems such as how to titrate these drugs, how to deal with wide platelet count swings and when to consider stopping therapy. For clinicians that would like to use a written plan to help guide ITP directed interventions around surgery, an ITP specific, perioperative template can be downloaded from the forum website at www.ukitpforum.org/guidelines.htm
ITP Clinical Studies
Most ITP Clinical Centres are participating in the FLIGHT study comparing up front mycophenolate with steroid vs. steroid alone while a number are also participating in commercial studies of novel agents and other studies. This forum website has a map showing the location of ITP Clinical Centres so please get in touch with them if you are interested in referring patients for clinical studies.
ITP Grant Award
The British Medical Association Foundation for Medical Research awarded the J. Moulton award to three directors of ITP Clinical Centres. Dr Nichola Cooper of Hammersmith Hospital is looking to understand clonality in T cells in ITP, Dr Charlotte Bradbury of Bristol is working on the development of a blood test to predict responses to steroid treatments in ITP patients and Dr Quentin Hill is researching the impact of Fc gamma receptor polymorphisms on treatment response in adult patients with primary ITP. (More about the BMA research awards and photos of the award ceremony that took place on December 5th can be found at www.bmafoundationmr.org.uk
ITP Centre Audit
The UK ITP Clinical Centres are undergoing their first national audit.The ITP Support Association survey of patients attending the Centres will close on 31st March.
ITP Patient Day, Hammersmith by Camelia Vladescu
The team of ITP researchers from Imperial College led by Dr Nichola Cooper, organised an ‘ITP Patient Day’ back in September 2017. The aim of the day was first of all to thank all the patients who have participated in research by donating blood and other tissue samples, who have allowed us access to their data and who have been happy to try out new drugs in phase I trials.
The day started with an introduction to ITP including information about diagnosis, pathogenesis (which simply means what causes ITP), and different types of treatments available. The second part focused on research and included an introduction to the different types of research and touched on the various projects that we have running at the moment. A new app called ‘ITP Pocket log’ was also introduced. The app is now live and you can download it for free from your app store. The event finished with Shirley, who kindly agreed to speak on behalf of the ITP Support Association followed by a patient who presented her journey since being diagnosed with ITP. Attendees had the opportunity to ask questions throughout the event and also meet other patients and share their stories.
We have received great feedback from the audience and would like to thank everyone who made the day possible, including all the speakers and of course, the ITP Support Association. A lot of patients and family members said they left with a better understanding not only of the condition but also of the current research. And most importantly, they liked being in a room where they were not the only ones with this weird, rare condition that sometimes people around them find hard to understand and relate to. So for all these reasons, we decided we will be hosting another ITP Patient day this summer. The date will be announced closer to the time so watch this space.