Data Learnings for Rare Disease Analysis Report

This report, produced by the Canadian Institute for Health Information (CIHI), focuses on the utilization of CIHI data for the analysis of rare diseases. It outlines the importance of pan-Canadian data in understanding the impact of rare diseases and the drugs developed for their treatment. The report discusses the challenges in identifying patients with rare diseases using CIHI's databases, including the use of International Classification of Disease (ICD) codes and prescription drug data. It emphasizes the need for accurate data linkage across various databases to improve patient identification and analysis. The report also highlights the significance of understanding how patients with rare diseases interact with the healthcare system, which can influence data collection and analysis outcomes. Additionally, it presents opportunities for enhancing CIHI's capabilities to support better decision-making in the context of rare disease analysis. Overall, the report aims to provide insights into the effective use of CIHI data for rare disease research.