ITP Natural History Study Registry

The ITP Natural History Study Registry collects disease-specific natural history data about individuals with ITP, with the goal of improving the understanding of ITP and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

The ITP Natural History Study Registry collects data on the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life (adult, caregiver, and pediatric versions)
• Bleeding and hospitalization
• COVID-19 and ITP
• Brain bleed: Intracranial hemorrhage (ICH)
• Medical genetics and results
• COVID-19 booster
• Physician satisfaction

We are interested in sharing our data with you! If you would like access to the ITP Natural History Study Registry data for a research project, please contact our registry administrator at pdsa@pdsa.org for more information. Access to the ITP Natural History Study Registry data is contingent upon project approval by the Registry Name Advisory Board.