March 2020 Platelet

The March 2020 edition of the Platelet journal is available online

The March 2020 edition of the Platelet Journal is now available to download from the members area of the website, if you have not yet joined the ITP Support Association click here. The print version is currently at the printers and will be on its way shortly.

The March 2020 issue of the Platelet contains all the usual favourites and more, including the latest advice on the Coronavirus, updates on the UK Convention change of date and articles from three of our Patient Mentors.

To read this and previous editions of the Platelet go to the members area of the website.

ITP Support Association Patient Perception Survey 2020

Over the years the ITP Support Association has carried out many surveys covering the subject of Immune thrombocytopenia (ITP). Many of you would have been aware that the association has now established a growing network of Local ITP Groups around the UK. Much of the feedback from local groups has covered subjects ranging from treatment at GP Surgeries or Local Hospitals to fatigue and mental health issues resulting from ITP. We are now inviting feedback from ITP Patients about the level of care received and perception of how ITP affects daily life. Your answers will be kept confidential – only the result summaries will be published. Many thanks for taking the time to complete this survey, the average time to complete is 10 minutes.

Please click this link to begin.

https://www.surveymonkey.co.uk/r/FVR5CK2

 
Novartis UK have published an excellent page on their website containing some great #ITPPatientResources, a series of videos, details of the ITP Pocket Log and advice about the ITP Emotional Burden. The videos and ITP Pocket Log were developed in collaboration with the @ITPSupportAssoc To view the Novartis website and the ITP Page go to

Grifols to launch TAVLESSE® in Europe and Turkey to continue reinforcing its commercial strategy and commitment to patients

European Commission has approved TAVLESSE® (fostamatinib) for the treatment of chronic immune thrombocytopenia (ITP) in adult patients who are refractory to other treatments.

Grifols gained exclusive rights to TAVLESSE® in ITP and other pipeline indications in Europe and Turkey as a result of the Collaboration and License Agreement reached with Rigel Pharmaceuticals in January 2019.

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Update on the UK Adult ITP Registry

by Haroon Miah, Research Coordinator / Data Manager at the Royal London Hospital

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. 

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ITP AWARENESS - Looking forward to RARE DISEASE DAY 2020

By Anthony Heard

The annual ITP September Awareness Campaign has now come to a close after a wonderful purple tinged month. With contributions from all corners of the globe we have once again drawn attention to ITP in spectacular fashion.

A huge thank you goes to every single person who took even the smallest action to spread awareness of our enigmatic condition. Whether it be writing a blog entry, an article, Tweeting or Facebooking about it or sporting Purple for Platelets, we have all done a fabulous job.

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INTERNATIONAL UPDATE for 2019

By Derek Elston, Trustee, ITP Support Association

The last twelve months have been extremely busy with the association being involved in representing ITP patients not only within the United Kingdom, but also within Europe and beyond.

Whilst much of the involvement has been reported in previous editions of the Platelet, a recap of the year illustrates what is and has been happening around the world with which we have been directly associated. The adage of the world becoming smaller is well known, but it is certainly true with regard to ITP. With the advent of new drugs from various pharmaceutical companies in the pipeline, life is becoming very interesting.

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