One of the most feared complications of ITP is the development of an intracranial hemorrhage (ICH) or 'brain bleed'. Thankfully, this is a very rare possibility impacting less than 5% of those with ITP. Due to such small occurrences of ICHs in the ITP population, we want to understand more about this type of bleeding event. To do this, we have launched an ICH survey within the ITP Registry. We are looking for feedback from anyone who has experienced an ICH, or from a caregiver who has lost someone due to an ITP-related ICH.
Your experience is a piece of the puzzle that could improve our knowledge regarding predictors of ICH, as well as improving the patient care experience. The Intercranial Hemorrhage (ICH) survey is available on the ITP Registry website.
Complete our new surveys today and help us to unlock the mysteries of ITP!
To get started, join the ITP Registry. If you already have an account, we hope you will return to the ITP Registry to provide additional insight via our latest updates and new questionnaires. Your answers to these questions and others in the survey can advance our understanding of the ITP patient journey and contribute to research and therapy development.