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.

 



The ITP Natural History Study Registry is an international patient-consented registry of adults and children with ITP. The registry aims to collect, store and retrieve data on the natural progression of ITP, enabling collection of data on diagnosis and treatment, management of care, quality of life, clinician reporting, and characterization of the ITP population as a whole. The registry is administered by PDSA and overseen by the National Organization for Rare Disorders (NORD) and a committee of leading hematologists, ITP patients, and caregivers. Registry questionnaires were built from common data element standards:

  1. Participant Profile

    Country, race, insurance, education, employment
  2. Medical and Diagnostic Data

    Diagnostic tests, clinical visits, family history, and pregnancy/childbirth
  3. Treatment and Review of Systems

    Treatments used (past and current), diet, surgeries, and review of systems
  4. Quality of Life

    Participant level of anxiety, depression, sleep, pain, fatigue, and physical health
  5. COVID-19 & ITP (Viral infection, Vaccinations, and Boosters)

    Experience with SARS-CoV-2 (coronavirus), COVID-19 vaccinations, and boosters
  6. Bleeding & Hospitalization Survey

    Experience with bleeding events and hospitalizations during ITP journey
  7. Medical & Genetics Report Survey

    Experience with genetic testing and any unusual laboratory results related to ITP
  8. Intracranial Hemorrhage (ICH; Brain bleed) Survey

    Experience with a brain bleed event, and possible risk factors


ITP Registry by the Numbers

  • Official Launch Date: Rare Disease Day, February 28, 2017
  • Patients Enrolled within 2 hours of launch: 100
  • Patients Enrolled within 24 hours of launch: 226
  • Patients Enrolled within first month: 337
  • Participants Enrolled as of February 5, 2024: 2,331
  • The Number of Active Participants (who have consented) as of February 5, 2024: 1,983
  • Participants with Surveys Complete as of February 5, 2024: 1,284

Access to the ITP NHS Registry data is contingent upon project approval by PDSA’s ITP Registry Advisory Board. Contact PDSA Research Program Manager Jennifer DiRaimo at research@pdsa.org with any questions. Registry was last updated November 15, 2023. NorthStar IRB (IRB)


Specifications

Learn how the ITP Natural History Study Registry can help further your valuable research, learn more about PDSA’s research opportunities, or contact PDSA at research@pdsa.org.


Enrollment

Learn how your patients can enroll today in the ITP Natural History Study Registry!


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

For more information or to request enrollment materials for your office, contact PDSA, 1.87.PLATELET (877.528.3538) or research@pdsa.org.

Enrollee identities are protected in this secure, confidential HIPAA (Health Insurance Portability and Accountability Act) compliant registry, and there is no cost for participation.