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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Join us for a fascinating evening of short, patient-friendly talks on the latest research in ITP

About this Event

Do you, a friend, or a relative have immune thrombocytopaenia (ITP)?

Join us for the third in our series of educational patient research evenings this time focusing on ITP caused by the immune system attacking platelets. The condition can result in a low platelet count and bleeding.

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Research and the ITP Support Association

The Association is a registered charity whose aims are to promote and improve the general welfare of patients and their families. It does this in a number of ways, by providing written information, support through the website, access to experts, mentors and other patients, and through the Conventions and small group meetings which allow patients to meet others with similar problems to discuss and share their issues. ­

The Association also has an important role highlighting the disease regionally, nationally and internationally through links with Societies and specialist groups, by organising medical seminars and by communicating with the regulators, commissioners and various NHS bodies. We have also been active in linking in with other patient groups and have strong links with the PDSA in the States and with a number of the European groups. ­ rough the latter we have been pushing recognition of ITP, as a bleeding disorder, on a wider scale.

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My Success with MMF

 By Anthony Heard

As I approach my thirteenth ITP Birthday on July 28th, I can reflect upon plenty of incidents during ITP years. It hasn’t been a picnic by any means. I have been through the Prednisolone ringer five times, Rituximab twice and a horrible week or so with Azathioprine (I could not tolerate it all and withdrew from it within ten days).

I am one of those ITP sufferers who have been fortunate to respond well to Prednisolone and Rituximab. With the steroid, I have obtained about 6 months remission every time that I went on it and with Rituximab, I got about 2 years and 8 months remission both times that I had it. But in February 2016, I relapsed from the Rituximab remission that I had enjoyed since Summer 2013.

So, at that point my specialist suggested that we try Mycophenolate Mofetil (MMF). He was reluctant for me to undergo a third round of Rituximab treatment. Although I had responded well to it twice already (2010 & 2013). He felt that the long-term damage that it could potentially do to my immune system was not worth the risk. More long stints with Prednisolone were also ruled out. Although I responded well to it, the problems that it caused every time that I had used it on 5 occasions already, would just not be bearable again. 

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June 25, 2019
-Approval Based on Positive Efficacy and Safety Data from Two Phase 3 Clinical Trials-
-Company Intends to Partner for the European Commercialization of DOPTELETDURHAM, N.C., June 25, 2019 (GLOBE NEWSWIRE) -- Dova Pharmaceuticals, Inc. (NASDAQ: DOVA), a pharmaceutical company focused on acquiring, developing and commercializing drug candidates for diseases where there is a high unmet need,

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