CLTI Patient Engagement Working Group
Chronic limb-threatening ischemia (CLTI) is an advanced form of peripheral artery disease (PAD) that can lead to amputation. People living with CLTI have a wealth of lived experiences to share that are distinct from the researchers who design and conduct trials to improve outcomes. Unfortunately, there is a lack of patient participation in research study design and execution. This means researchers struggle to find diverse and representative trial participants, and that study results do not always answer questions that are important to CLTI patients.
To help address this problem, Vascular Cures is convening a Working Group to promote and facilitate CLTI patient engagement in research. This initiative will build capacity to engage CLTI patients’ research as advisers and participants, so that study results align with the needs of patients. It will also prioritize the kinds of research patients want most to see conducted. Ultimately, this work will create new knowledge and treatments that more closely align with CLTI patient needs and improve health outcomes.
Working Group participants are dedicated to building a future in which academic researchers, industry partners, and people with CLTI can effectively collaborate to design and implement patient-centered trials with a high likelihood of success. Members include representatives from patient care and research (vascular surgery, cardiology, podiatry, diabetology, vascular medicine), regulatory and policy, reimbursement, health systems, professional societies, patient advocacy, and patients themselves.
For Current Working Group Members ONLY:
- Access the password-protected shared workspace here.
- For technical assistance, contact: email@example.com
Working Group Background
In 2020 Vascular Cures hosted our biennial Innovation & Research Summit to prioritize pressing needs in vascular research and care and identify potential collaborative solutions. The focus of that event was “Patient-Centered Technology for Harnessing & Using Data Remotely” in PAD (intermittent claudication) and CLTI. The CLTI breakout group identified critical unmet needs and challenges in patient engagement in research, starting with a limited understanding of the comprehensive patient experience and preferences.
If you are a provider, patient or caregiver who would like to recommend someone to participate or learn how you can be involved, click here or fill out the intake form.
This CLTI Patient Engagement Working Group was funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (21136-VC).
This work is supported by a Eugene Washington Engagement Award from The Patient-Centered Outcomes Research Institute® (PCORI®). PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.
The views presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.