Global Immune Thrombocytopenia (ITP) Awareness Week 2023

September 25-29th 2023 is Global ITP Awareness Week!

This specially designated week calls for individuals around the world to join together to promote public awareness of a rare autoimmune disease called immune thrombocytopenia (ITP). The theme for this year’s Global ITP Awareness Week is Increasing Awareness to Improve Outcomes and we thank you in advance for helping us empower the global ITP patient community!

Please mark your calendar and help us bring attention and understanding to this rare bleeding disorder throughout the week.

 Also help us to make a splash on Sport Purple for Platelets on September 29^th.

ITP affects 9.5 in 100,000 people. In ITP the immune system attacks important blood cells (platelets) essential for normal blood clotting, resulting in reduced numbers of platelets and putting patients at risk of bleeding, which can occur to varying degrees. Persistent ITP lasts 3-12 months; chronic ITP lasts over a year. Treatment practices vary between different nations and local treating hospital sites within individual nations.

In the UK, patients with newly diagnosed disease are usually referred to haematology departments in  hospitals  for diagnosis, treatment (if needed), monitoring and follow up. For patients needing treatment,  a course of corticosteroids (steroids – a man-made version of a hormone the body makes naturally) is usually recommended as the initial (first line) treatment.

Most of patients respond well to corticosteroids with a rise in platelet count, but improvements are usually temporary – in the majority of patients, the disease will return. Long-term use of these drugs can lead to side effects that can be serious and distressing to the patient, and some patients need further ‘rescue’ treatment or other medications or rarely an operation (splenectomy) to remove their spleen (an organ involved in the production and removal of blood cells).

For more information about ITP, please visit the ITP International Alliance website: Home (globalitp.org)

The Centre for Trials Research (CTR) at Cardiff University, Wales, UK is increasing national and international capacity in ITP and other blood disorder research through delivery of well-designed clinical trials and studies; the RODEX study being a prime example.

RODEX is an investigator-led commercially funded (Amgen) clinical trial developed and led by researchers at the Andalusian Public Foundation for Health Research Management of Seville (FISEVI), Spain through collaboration with the UK Chief Investigator Dr Charlotte Bradbury (Consultant Haematologist at University Hospitals Bristol and Weston NHS Trust Dr Charlotte Bradbury – Our People (bristol.ac.uk) and Senior Lecturer in Haematology at the Faculty of Translational Health Sciences, University of Bristol University Hospitals Bristol and Weston NHS Foundation Trust (UHBW NHS)). The CTR is acting as the UK National Coordinator to support study delivery in England, Wales and Scotland.

The trial aims to recruit 126 adult patients with newly diagnosed ITP; the objective being to find out if a two-drug combination of corticosteroids (dexamethasone) plus a medicine called romiplostim is better than dexamethasone alone in this patient group. The trial is already actively recruiting ITP patients in Spain and Italy and pending recruitment of the first UK participant in Autumn 2023. We hope that through this trial we can improve the outcome of future patients diagnosed with ITP.

Watch this link for updates on study progress! Studies and trials – Centre for Trials Research – Cardiff University

Please share this article on social media using #ImprovingOutcomesForITP, #global4ITP or #ITPaware

Please download the Global ITP Awareness Logo to display in your local community or workplace to help us raise awareness of this important rare condition.

• by Jo Smith, Trial Manager/Research Associate at the Centre for Trials Research, Cardiff, Wales, UK