Surveys Available Within the Registry
Surveys Available Within the Registry
Bleeding and Hospitalization
Survey
Medical and Genetics Results
Survey
Brain Bleed (ICH)
Survey
Adult Quality of Life
Surveys
Child Quality of Life
Surveys
Treatment
Survey
Caregiver
Survey
Demographic
Survey
COVID-19 and ITP
Survey
Booster
Survey
Physician Satisfaction
Survey
Clotting and ITP
Survey
(coming soon)
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:
Participant Profile
Country, race, insurance, education, employmentMedical and Diagnostic Data
Diagnostic tests, clinical visits, family history, and pregnancy/childbirthTreatment and Review of Systems
Treatments used (past and current), diet, surgeries, and review of systemsQuality of Life
Participant level of anxiety, depression, sleep, pain, fatigue, and physical healthCOVID-19 & ITP (Viral infection, Vaccinations, and Boosters)
Experience with SARS-CoV-2 (coronavirus), COVID-19 vaccinations, and boostersBleeding & Hospitalization Survey
Experience with bleeding events and hospitalizations during ITP journeyMedical & Genetics Report Survey
Experience with genetic testing and any unusual laboratory results related to ITPIntracranial 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.