About Our Project
Stroke continues to be the leading cause of death and disability, especially in rural regions of the United States like Pennsylvania. Survivors and caregivers in these areas often face greater obstacles, from limited access to medical care and specialists to social isolation and lack of support resources. These challenges lead to poorer outcomes, higher stress, and greater health disparities.
Our initiative is designed to close some of these gaps by partnering directly with stroke survivors, caregivers, healthcare providers, and local community members. Together, we aim to identify real needs and create research that leads to practical, community-driven solutions.
Our Goals
Engage Equal Partners
Engage rural stroke survivors, caregivers, and advocates as equal partners in research.
Empower Communities
Empower communities to share experiences, voice concerns, and shape research priorities.
Foster Trust
Foster trust and collaboration between residents, healthcare providers, and researchers.
Improve Care Strategies
Develop strategies to improve stroke recovery and care in rural areas.
Project Overview
Inside the PCORI Project: A Conversation
Join us for a conversation about our PCORI project, where we share how it began, the people involved, and the impact we hope to make
Understanding Our Research Process
Over two years, this project moves from building a strong foundation to delivering meaningful, community-driven outcomes.
It begins with recruiting Community Advisory Board (CAB) members, hosting orientation and training sessions, and holding initial meetings to guide the project's direction. Early milestones also include finalizing the IRB process and launching the project website.
As the work progresses, we engage stakeholders, recruit and onboard members of the rural stroke community, and work together to identify key needs and research priorities. Topic groups are formed, training is provided, and a clear engagement and dissemination plan is developed. The project concludes with community events, scholarly publications, and a comprehensive final report.
Why Your Voice Matters
Your lived experience is essential. By sharing your story and insights, you help ensure that research efforts focus on what truly matters to rural stroke survivors and their families.
Together, we can guide meaningful change in stroke care and recovery. Your unique perspective is the cornerstone of truly patient-centered outcomes research.
Meet Our Team
Principal Investigators
Zand, Ramin.
Principal Investigator
Professor, Vascular Neurology, Department of Neurology, Department of Public Health Sciences, Pennsylvania State University
McShane, Michael P.
Co-Principal Investigator
Associate Professor, Department of Medicine , Pennsylvania State University
Co-Investigators and Staff
Abedi, Vida.
Associate Professor, Department of Public Health Sciences , Pennsylvania State University
Radfar, Nazli.
Project Manager, Department of Neurology, Pennsylvania State University
Vamuri, Ajith.
Staff Scientist, Department of Neurology, Pennsylvania State University
Vonk, Michelle.
Grants & Contract Manager,Department of Neurology, Pennsylvania State University
Consultant
Thomas, Gay.
Owner, GR Thomas Advisors LLC; Former Co-Founder & Lead Stakeholder Engagement Consultant, Wisconsin Network for Research Support (WINRS)
Suarez-Almazor, Maria E.
Professor, Department of Health Services Research, Division of Cancer Prevention and Population Sciences, University of Texas MD Anderson Cancer Center
Zimmerman, Emily.
Professor, Department of Epidemiology, School of Public Health, Virginia Commonwealth University
Community Advisory Board (CAB) Members
Coleman, Amber.
Director of Community Health, Pennsylvania State University
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Hwang, Wenke.
Professor, Department of Public Health Sciences, Pennsylvania State University
Patrick, Scott.
Real estate investor and former collegiate athlete based, Hershey, Pennsylvania
Dux, Philip.
Richardson, Alicia.
Stroke Nurse, System Stroke Director, and Advocacy Leader, Pennsylvania State University
Roy, Pete.
Neurologist and Director, Neurosciences and Stroke Program, Mount Nittany Health
Taylor, Danielle.
Speech-Language Pathologist, Geisinger Memory and Cognition Program
Wasko, Lisa.
Stroke Nurse, System Stroke Director and Advocacy Leader, Geisinger
Wildasin, Amy.
Nurse Navigator, Stroke Program, Pennsylvania State University
Fetzer, Lannette.
Family Nurse Practitioner, Quality Improvement Coordinator at the Pennsylvania Office of Rural Health
What is the CAB?
Our Community Advisory Board is a diverse group of stroke survivors, caregivers, healthcare providers, and local advocates.
Their guidance ensures that our research stays focused on practical challenges and solutions that reflect real life in rural communities. The CAB is the heartbeat of our community-driven approach.
Supported By
Patient-Centered Outcomes Research Institute (PCORI)
Lead Institution
Pennsylvania State University Hershey Center
Duration
2 years
Engagement Training and Tools
Enhance Understanding of CER
CERTaiN Training
CERTaIN: CER/PCOR Methods: Introduction
Comprehensive training for patient-centered research.
Learn more →Penn State Clinical and Translational Science Institute (CTSI)
Comprehensive tools, services and training to make health research more efficient at Penn State. Provides resources for study design, data collection, recruitment, and community engagement.
Access CTSI Resources →IRB Resources and Videos from Penn State IRB
Comprehensive resources, training materials, and videos for Institutional Review Board (IRB) submissions and human subjects research compliance.
Access IRB Resources →Research Fundamentals: Preparing You to Successfully Contribute to Research | PCORI
A foundational learning package for contributing to patient-centered outcomes research.
Explore resource →Sampling, Recruiting, and Retaining Study Participants: Research Fundamentals Learning Package Module 4
Focuses on sampling, recruiting, and retaining study participants.
Explore module →The SEED Method: An Evidence-Based Method for Engaging Communities
A valuable resource for community engagement in research.
Learn more →Recommended Articles & Publications
Global, Regional, and Country-Specific Lifetime Risks of Stroke, 1990 and 2016
Research findings on stroke recovery challenges and opportunities in rural settings.
Read article →Rural Stroke Patients Have Higher Mortality: An Improvement Opportunity for Rural Emergency Medical Services Systems
Analysis of mortality rates and emergency medical services challenges in rural stroke care.
Read article →The Patient-centered Outcomes Research Institute's Role in Advancing Methods for Patient-centered Outcomes Research
Overview of PCORI's mission and methodology development for patient-centered comparative effectiveness research.
Read article →Care Transition Interventions to Improve Stroke Outcomes: Evidence Gaps in Underserved and Minority Populations
Research on care transition interventions and their impact on stroke outcomes in underserved and minority populations.
Read article →Contact Us
If you have questions or want to join, please reach out to our team. We welcome all rural stroke survivors, caregivers, healthcare providers, and community advocates to be part of this important research effort.
Email Our Team