Title:Disease Registries: Challenges and Opportunities to Realize Their Full Potential
Volume: 2
Issue: 2
Author(s): Semra Yoruk
Affiliation:
Keywords:
Disease registry, electronic data capture, observational studies, patient registry.
Abstract: 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.
