Patient and caregiver advisory voice
Reviews plain-language materials, burden expectations, accessibility, patient priorities, and community trust concerns.
Governance
Trust needs visible roles, review paths, and public accountability.
This page explains how MDA reviews collaborations, protects patient priorities, and makes governance expectations visible while the advisory roster continues to grow.
Governance roles
Who is represented in review.
Research and data-use review
Reviews proposed research uses for purpose, data minimization, consent fit, return of value, and patient burden.
Privacy and security review
Reviews privacy risks, access boundaries, incident response expectations, and safe public reporting practices.
Public collaboration registry
Data and partner activity is understandable.
Mito Map summary sync
When members authorize it, MDA can use selected Mito Map summaries to help connect them with programs and research opportunities.
Natural history opportunities
Open research opportunities help members contribute structured longitudinal summaries where consented.
Partner review pipeline
Partner and sponsor inquiries are routed through review before any governed collaboration can proceed.
Review standard
Every governed collaboration answers the same core questions.
What is the purpose and who benefits?
What data is needed, and can the request be minimized?
What consent pathway applies?
What burden does this create for patients and families?
What value, evidence, funding, or findings return to the community?