The National Eczema Association Approved for $250,000 Engagement Award from PCORI
18 Mar 2024
Award supports two-year project to engage patients and caregivers to identify potential future patient-centered eczema research focus areas
NOVATO, Calif., March 18, 2024 /PRNewswire/ -- The National Eczema Association (NEA) has been approved for a $250,000 funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The award will support a project titled "Paving the Way towards Meaningful Partnerships: Fostering Regional PCOR to Enhance Eczema Outcomes." The award period spans two years, from February 1, 2024 through Jan 31, 2026.
Eczema affects one in 10 people in the U.S. with a highly heterogeneous nature and multidimensional burden that necessitates personalized treatment. Eczema treatment is rapidly evolving, making patient-centered outcomes research (PCOR) vital to advance care and decision-making that aligns with patient-centric outcomes and preferences.
Working with academic institutions, researchers and patient communities, NEA will recruit a diverse group of eczema stakeholders to form six regional research hubs that will help identify priority topics for future patient-centered PCOR and comparative clinical effectiveness research (CER) on eczema. NEA will develop regional engagement frameworks highlighting patient partnerships to guide future eczema PCOR and CER applicable to a diverse patient population.
The PCORI Engagement Award will be directed by co-project leads Wendy Smith Begolka, MBS, chief strategy officer at NEA and Jessica K. Johnson, MPH, director of community engagement at NEA.
"We are grateful for the support from PCORI for this important work to promote the continued engagement of patients as research partners," said Smith Begolka. "As the list of FDA-approved eczema treatments is growing, the need for patient-centered research to support informed decision-making and direct future research investments is becoming increasingly important."
The project has promising applicability and scalability to integrate the diverse lived patient experience, including that of underrepresented communities. Long-term, the results of this effort will help improve both the quality of life and health outcomes for eczema patients and support increased communication between patients and eczema providers. Moreover, the eczema patient engagement frameworks established in this project will provide a structured model to ensure meaningful contribution in eczema research by both patient/caregiver and researcher stakeholders alike.
For more information on the PCORI Engagement Award and NEA's funded project, visit here. This project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI's engagement goals and objectives, as well as program criteria.
About the National Eczema Association
Founded in 1988, the National Eczema Association (NEA) is a 501(c)(3) nonprofit and the largest patient advocacy organization serving the over 31 million Americans who live with eczema and those who care for them. NEA provides programs and resources to elevate the diverse lived experience of eczema, and help patients and caregivers understand their disease, actively engage in their care, find strength in one another – and improve their lives. Additionally, NEA advances critical eczema research and partners with key stakeholders to ensure the patient voice is represented and valued in education, care and treatment decision-making. The eczema community is at an exciting juncture, with increased recognition of the seriousness and burden of eczema and a surge in scientific interest and development of new treatments. Bolstered by NEA's strategic plan, Blueprint 2025, we are driving toward the ultimate vision: a world without eczema. Learn more at NationalEczema.org.
SOURCE National Eczema Association
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