European registry on Inherited Platelet Disorders (IPD) project
An SWG Grant-supported project initiated by EHA’s Thrombocytopenia and Platelet Function Disorders SWG.
Project team
Project background and aims
The primary objective of this EHA-SWG-initiated small research project is to establish the first European registry on IPDs.
IPDs are a heterogeneous group of rare bleeding diseases that is:
- Associated with a reduction of platelet numbers and/or function
- Characterized by a bleeding tendency ranging from mild to severe
Despite recent significant breakthroughs, IPDs are largely neglected because they are rare and generally considered benign. For this reason, they remain under-diagnosed, and their prevalence is still unknown.
Rare disease registries are a way of systematically collecting data on the diagnosis and management of patients that allows us to:
- Estimate the prevalence of a disorder
- Get deeper insight into a disorder’s prognosis
The potential result of this is that we can improve both diagnosis and management. However, the few existing registries on IPD are set up as independent studies and do not interoperate with one another.
The primary objective of this EHA-SWG-initiated small research project is to establish the first European registry on IPDs (ERIPD) that will:
- Represent the first collection of clinical, laboratory, and genetic data of a large cohort of patients with different forms of IPD from different geographical areas in Europe
- Provide insights into the real prevalence of these disorders in Europe
- Help to address unmet needs regarding their impact on patients’ lives and healthcare systems
Project updates
You can find out more about the status of this project by reading the latest update from Prof Paolo Gresele.