Stakeholder Roles in a Collaborative Research Model
Academic & Government Researchers: to develop an understanding of the causation and natural history of the disease and identify possible therapies
Government Regulators: To ensure the safety and efficacy
Patients & Caregivers: to participate in the research process: identifying treatment priorities, focusing research efforts and funding basic and clinical research
Pharmaceutical & Biotech Companies: to develop an understanding of the causation and natural history of the disease and identify possible therapies