Project Summary

Most rural and urban families affected by sickle cell disease (SCD) have no systematic way to engage in, or lend their expertise to, patient-centered outcomes research (PCOR). The overarching goal of this two-year project is to build the readiness capacity of individuals living with SCD throughout Tennessee (TN) for PCOR and to obtain a population-based representation for PCOR-based initiatives. Establishing a sustainable TN-SCD Network will serve as a conduit for driving patient-centered research and healthcare service agenda. The pre-existing and well-established partnership between the Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease; the Sickle Cell Foundation of Tennessee, a community-based organization; and clinical providers throughout the state provides an opportunity to create the underpinnings for coordinated patient-centered education and linking of SCD stakeholders throughout TN to inform and guide PCOR.

The projected outputs from the project are the creation of a rural and urban sickle cell disease community-based network; facilitation of educational training sessions on research basics for non-research stakeholders; a patient-centered conference and an advocacy conference; and implementation of outreach methods created by the community-based network.

Project collaborators include a patient investigator; regional and local community ambassadors; and patient and stakeholder executive committee members. 

Project Information

Velma Murry, PhD^
Vanderbilt University

Key Dates

30 months

^Michael DeBaun, MD, MPH, MS was the original project lead.


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022