Robust, quality health data is critical to enhance disease knowledge, healthcare delivery, medical research and development, support policy and regulatory decisions; and ultimately benefit patients as well as societies. Worldwide, efforts are growing to strengthen the collection and use of data through patient registries or the shaping of collaborative health data ecosystems.
Therefore this year, World PI Week will shine a light on the value and role of data for more efficient, higher quality, safer care for Primary Immunodeficiency (PID) patients.
“Turning real-world data into knowledge for better PID care: Improving access to diagnosis, treatment and care for PID patients through collaborative & real-world data use.”
Under the main theme of data, the 2023 campaign will focus on:
- Diagnosis: Data helps improve knowledge & understanding of PIDs, which is crucial to ensure timely diagnosis.
- Treatment & Care: Data allows to improve treatment & care leading to better patients’ health outcomes and enhanced quality of life.
- Research & Innovation: Research & innovation also help generate evidence to support change in policies and practices for the benefit of PID patients
- Medical Education: Evidence-based medical education and best practices exchange are critical to progress clinical care worldwide.
Join the campaign, help make a difference! Strike a Y, show support to the PID cause!
Find all campaign materials here.