Disease Registries

Patient registries, whether disease-based or product-focused, can provide your organization, as well as the health community, with invaluable data about the natural history of a disease under standard care practices and/or the safety and effectiveness of a product. These data can then be presented as evidence to:

  • Meet safety requirements and manage benefits and risks
  • Provide evidence to meet evolving coverage or reimbursement requirements
  • Generate scientific evidence and publications
  • Develop Treatment Guidelines
  • Demonstrate good product stewardship

Links to some existing registries for conditions identified through newborn screening or may be targets for newborn screening: