Defining and Creating the Registries of the Future – September 22, 2022-Defining and Creating the Registries of the Future Video

Video Transcription

Video Summary

The recent webinar hosted by the Council of Medical Specialty Societies (CMSS) delved into the future of medical registries, exploring their evolution and potential applications in healthcare. Helen Burstyn, CEO of CMSS, alongside Kathleen Hewitt from the American Society of Hematology (ASH), spearheaded the session, focusing on registry science and the evolving roles registries play in research and clinical practice improvement.<br /><br />Key speakers included:<br />1. Dr. Danica Marinak-Dabik, who emphasized the concept of Coordinated Registry Networks (CRNs). CRNs aim to harmonize data from multiple health systems, creating interoperable, real-world, longitudinal data sources. This initiative, supported by the FDA, envisages a future where standard practices and electronic health records (EHRs) are strategically aligned to enhance data quality and regulatory decision-making.<br /><br />2. Dr. Bill Wood presented the ASH Research Collaborative's Data Hub, which follows CRN principles, leveraging direct EHR data feeds, patient-reported outcomes, and the latest data transmission standards like FHIR. This framework supports innovative research and clinical improvements, particularly in hematologic diseases like sickle cell disease and multiple myeloma.<br /><br />3. Dr. Philip Goodney showcased the Vascular Quality Initiative (VQI) and its Vision CRN, which integrates registry data with Medicare claims to track long-term outcomes of vascular interventions. This system has been instrumental in identifying device failures and supporting regulatory revisions, showcasing the practical impact of well-coordinated registry networks.<br /><br />The webinar concluded by addressing questions about integrating registries into CRNs, emphasizing the need for clear objectives, scientific and technical competencies, and sustainable funding models. The session highlighted the transformative potential of registries in generating valuable real-world evidence to improve patient care and inform policy.

Keywords

medical registries

CMSS

registry science

Coordinated Registry Networks

CRNs

electronic health records

EHR

ASH Research Collaborative

FHIR

Vascular Quality Initiative

real-world evidence

healthcare improvement