The 2023 Promise of Patient-Led Research Integration into Clinical Registries and Research program led to a series of new models developed to meaningfully engage patients in clinical registries and research.

The playbook, webinars, and scorecards from this project support capacity building and sustainability models in clinical research and patient communities. CMSS was pleased to collaborate with extraordinary patient team at the Patient-Led Research Collaborative (PLRC) on Long COVID to foster new models of patient-led research.

Audience: 

Resources generated from this initiative are of interest and relevance to: 

• Specialty society leaders, staff, and physician members 

• Clinical researchers and funders 

• Patient organizations 

Value: 

Patient-led scorecards create new baselines for meaningful engagement in comparative effectiveness research (CER) by addressing patient/partner burden, readiness, integration, and governance. This initiative is part of CMSS’s commitment to support capacity building and sustainability models for patient-centered outcomes research. 

Acknowledgement

This project was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (21376-CMSS).  

Contact:  

Suzanne Pope, CMSS Senior Advisor  

Press Release

Collaborative Approved for PCORI Engagement Award for The Promise of Patient-Led Research Integration into Clinical Registries and Research Project

Related Resources

Patient-Led Research Scorecards

Document

Research Partner Readiness and Integration into the Research Process

Webinar

Patient/Partner Governance and Patient Burden

Webinar

How to Improve Your Score/Q&A Session

Webinar

Through this partnership, we consider more sustainable models for patient-led research, including more collaborative, patient-centered research models between the patient and clinical communities.

– Helen Burstin, MD, MPH, MACP, CMSS Chief Executive Officer