“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/
The ITP Natural History Study Registry is an international patient-consented registry of individuals 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 and cover the following topics:
If you would like access to the ITP Natural History Study Registry data for a research project, please contact our registry administrator, PDSA Research Coordinator, Alexandra Kruse, at firstname.lastname@example.org Access to the ITP NHS Registry data is contingent upon project approval by PDSA’s ITP RegistryAdvisory Board.