Publications by authors named "Midori Senoo"
Res Involv Engagem
November 2023
Article Synopsis
- Stakeholder involvement in rare-disease policymaking can enhance research prioritization and resource allocation, though a structured methodology is still developing.
- An 'Evidence-generating Commons' was created to facilitate collaboration among patients, family members, researchers, and policymakers through 25 online workshops from 2019 to 2021.
- These workshops led to the identification of 10 categories of difficulties faced by rare disease patients and seven key research priorities, including daily life challenges and financial burdens.
