Bleeding and Hospitalization in ITP Survey

Have you or your child ever experienced a nosebleed, blood blisters in the mouth, easy bruising, petechiae, or other bleeding due to your ITP? Been hospitalized because of bleeding or a low platelet count? If so, we want to hear from you!

We now have a “Bleeding and Hospitalization in ITP” survey to help us better understand how and why bleeding happens, who gets hospitalized, how often and for how long.


Medical and Genetics Reports Survey

The Medical and Genetics Reports survey is another survey available on the ITP Registry website.

Within this survey, you have the option to upload medical or genetic test reports you wish to include in the registry. We encourage anyone who has had genetic testing related to their ITP to complete this survey and upload their genetic test report so we can expand our understanding of inherited platelet disorders and learn which ones are most prevalent. Uploading your genetic test report will also serve as diagnostic confirmation.

You may also upload any non-genetics laboratory reports you feel is important to your ITP diagnosis. Please do not upload your entire medical file, only unique reports related to your diagnosis of ITP or other platelet disorder.


Intracranial Hemorrhage (ICH) Survey


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!

Take Surveys

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.

 



By registering with PDSA’s global ITP National History Study Registry you’ll join thousands of patients living with ITP from around the world to advance research and improve the quality of life for ITP patients. At PDSA, we know you are the key to unlock a positive future for those with ITP.


Register Today to Help Advance Research

PDSA is proud to have been chosen by the National Organization for Rare Disorders (NORD) to participate in its cooperative project with the U.S. Food And Drug Administration (FDA) known as the NORD Natural History Study Project

Enroll today in PDSA’s National Patient Registry dedicated to those who have ITP to advance research and improve the quality of life for patients.

Enroll


What is the ITP Natural History Study Registry?

The ITP Natural History Study Registry is an international patient-consented registry of individuals with ITP. The registry aims to collect data on the natural progression of ITP, enabling PDSA to gather data on diagnosis and treatment, management of care, quality of life, and clinician reporting. The registry is administered by PDSA and overseen by NORD and a committee of leading hematologists, ITP patients and caregivers.


Why Register?

Registries provide healthcare professionals and researchers with first-hand information about people with certain conditions like ITP and other platelet disorders, individually and as a disease population, to increase their understanding of the condition over time.

Rare diseases like ITP have posed unique challenges to researchers and drug developers because of small patient populations, lack of data, clinical endpoints that are often unclear, and clinical trial enrollment and retention challenges. NORD’s Natural History Studies project empowers patients and families while helping eliminate some of the uncertainty in rare disease research, making way for progress.


Advance Research

Natural history studies are longitudinal studies that aim to fill research gaps, which help medical researchers better understand how diseases progress over time. They yield vital information essential to clinical trial designs, such as biomarkers, demographics, important clinical symptoms, genetic and environmental variables, and patient perspectives.


Make a Difference

Your participation in the ITP Natural History Study Registry is the first step to increase what we know about ITP and other platelet disorders, help healthcare professionals improve treatment, and allow researchers to design better studies on a particular condition, including development and testing of new treatments. The more patients register the more data researchers will have to further their work, which can accelerate research into new therapies for ITP and potentially a cure for the future.


How to Enroll

Enroll today in the ITP Natural History Study Registry! For more information, contact PDSA, 1.87.PLATELET (877.528.3538) or email, research@pdsa.org.

Your identity will be protected in this secure, confidential HIPAA (Health Insurance Portability and Accountability Act) compliant registry, and there is no cost for you to participate.

Thank you for helping make the world of ITP a more manageable place to be!

Enroll