#7 Policy and patient organization engagement

Working Group 7
WG Name Policy and patient organization engagement
WG Leads Holm Graessner (Tübingen, Germany)
Julie Greenfield (Ataxia Research UK, UK)
Sue Hagen (National Ataxia Foundation, USA)
WG Objectives
  • Propose charter including governance structure
  • Facilitate cooperation with other stakeholders
  • Establish trial readiness services including training measures
  • Provide guidance on key activities of AGI such as data and biomaterial sharing
Results
  • MoU with C-Path focused on collaboration in CPTA
  • Draft charter (April 2021)