Clinician-led clinical data registries, such as the STS National Database, are sources of real-world evidence that are uniquely positioned to drive quality improvement and meaningful health care research, but they face significant regulatory barriers that stifle their potential. It is essential that clinician-led clinical data registries have timely, broad, and continuous access to Medicare claims data to enhance our understanding of the long-term impacts of innovative therapies.  


  • Secure Reasonable Clinician-led Clinical Database Access to Federal Health Plan Claims Data: Access to Medicare data is critical to facilitating longitudinal outcomes-based research that improves health care quality, cost efficiency, and ensures patients access to emerging technologies through processes like Medicare coverage with evidence development.   
  • Update, Modernize, and Utilize Social Risk Data: Develop widely adopted national industry standards for the collection of race, ethnicity, and language (REL) data or social determinants of health (SDOH) data and include data in risk-modeling. 

Endorsed Legislation

H.R. 5394: Meaningful Access to Federal Health Plan Claims Data Act of 2021