Disease Registries: Challenges and Opportunities to Realize Their Full Potential

This editorial review article discusses the current status of disease registries, mainly focusing in oncology and rare disease condition. It has been shown that analysis of the real world data collected from disease registries and observational studies improve healthcare by gathering data on disease epidemiology, advance in information regarding safety and efficacy of new drugs and filling the gaps of randomized clinical trials. With the improvement in digital system and standardization of the nomenclature of electronic data capture system, the usage of disease registries as a source for research will increase significantly. Collaboration of all stakeholders, scientific, regulatory, caregivers, payers and patient advocate is required to overcome barriers.