Project Summary

The Hereditary Neuropathy Foundation (HNF) proposes a platform to expand the role of patients, caregivers, and other stakeholders by conducting multi-year workshops led by patients and stakeholders. These workshops aim to address critical topics in patient-centered outcomes research/comparative effectiveness research (PCOR/CER) by focusing on patients’ experiences with inherited peripheral neuropathies (IPNs) in an effort to identify patient-centered measurement tools that are fundamental to research and clinical practice. These workshops will include patients with all forms of IPNs, parents, caregivers, clinicians, researchers, funding agencies, and industry to discuss barriers and opportunities so that strategies can be implemented to help eliminate those barriers and that patient-reported outcomes can be translated into objective measures. HNF believes that patients and advocates working alongside funded scientists will lead to the identification of the critical issues and gaps that must be understood to further enhance PCOR. This may enable developments that are most likely to show direct benefit for patients.

More on This Project

Patient Centered Charcot-Marie-Tooth Summit Report

Project Information

Allison Moore, BS
Hereditary Neuropathy Foundation

Key Dates

12 months


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