Surveys Available Within the Registry

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.