by: Parent Project Muscular Dystrophy
For the last few years, PPMD has been working in partnership with the National Alliance for Caregiving, which has included the participation of PPMD’s Annie Kennedy on the planning committee of a national summit that was convened in November of 2018 to explore the potential role of caregivers in medical product development.
Today, the report from this work Paving the Path for Family-Centered Design: A National Report on Family Caregiver Roles in Medical Product Development (download) was released and highlights work by many leaders in the field including PPMD – as well as caregiver perspectives including the Denger family.
The report explores the vital roles that family caregivers can play in shaping biomedical research and development, regulatory decision-making and healthcare delivery — and how these roles can change throughout the progression of a disease. This report is a part of a national engagement with policy makers around how to incorporate the critical knowledge of caregivers in developing pharmaceutical products, biologic therapies, diagnostics, and medical devices.
PPMD will remain engaged in a leadership role in these efforts as the coalition works to implement next steps and optimize opportunities for regulatory engagement and outcomes for both patients and caregivers.
