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!
Complete PDSA’s “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.
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.
Complete our “Bleeding and Hospitalization in ITP” Patient Registry survey today and unlock the mysteries of ITP!
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:
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Participant Profile
Country, race, insurance, education, employment -
Medical and Diagnostic Data
Diagnostic tests, clinical visits, family history, and pregnancy/childbirth -
Treatment and Review of Systems
Treatments used (past and current), diet, surgeries, and review of systems -
Quality of Life
Participant level of anxiety, depression, sleep, pain, fatigue, and physical health COVID-19 & ITP (Viral infection, Vaccinations, and Boosters)
Experience with SARS-CoV-2 (coronavirus), COVID-19 vaccinations, and boosters
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 November 1, 2022: 2,140
- The Number of Active Participants (who have consented) as of November 1, 2022: 1,835
- Participants with Surveys Complete as of November 1, 2022: 1,155
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 March 16, 2020. 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.
