Why Rare Disease Registry and Its Benefits
No unifying definition of rare disease has been given till date, but in the US, it is described as a condition that affects less than 2,00,000 individuals in the United States. Registry of rare diseases is done to ensure that clinicians, researchers, and drug manufacturers have access to 'The Right Data at the Precise Time,' powered by the patients' data. The technology platform to Rare Disease Registry includes technology to back four fundamental objects. These are- · Accelerating Diagnosis · Scaled and Efficient Patient Owned Data Collection · Increased Data Access and · Broad Analysis 8 steps to a rare disease registry The eight steps described here illustrate how a patient organization raises its visibility & garner attention from academics and pharmaceuticals to examine their disease. 1. Design your registry 2. Launch the simple population registry 3. Customize the registry to record long