Physician Registry Coalition Extols Benefits of Clinical Data Registries

On Nov. 11, the AANS and the CNS joined the Physician Clinical Registry Coalition (PCRC) in sending a letter to the Medicare Payment Advisory Commission (MedPAC) outlining how clinical data registries can improve health care quality. The coalition noted that CMS should expand its use of registries and urged MedPAC to consider the power of registries as it forms its recommendations for health care policy.

In a letter to Reps. Diana DeGette (D-Colo.) and Fred Upton (R-Mich.), the PCRC expressed support for the Cures 2.0 Act (H.R. 6000). Among other things, this legislation would ensure that clinician-led clinical data registries have meaningful access to Medicare, Medicaid and State Children’s Health Insurance Program claims data to better track patient outcomes over time, expand their ability to assess the safety and effectiveness of medical treatments and provide them with the information necessary to evaluate the cost-effectiveness of therapies. The letter also applauded the inclusion of a provision to increase the use of real-world evidence and support the use of data from clinical care data repositories and patient registries to fulfill post-approval study requirements for products regulated by the FDA.