#1 Clinical outcome assessments & registries

Working Group 1
WG Name Clinical outcomes assesssments & registries
WG Leads Thomas Klockgether (Bonn, Germany)
Matthis Synofzik (Tübingen, Germany)
WG Objectives
  • Define a set of data including a graded catalogue of COAs that will serve as the standard for future sharing of clinical data and joint clinical studies.
  • To keep the hurdles for contribution of data to common analyses and studies low, it was agreed to define a mandatory dataset (minimal dataset) that can ideally be obtained during a routine clinical consultation and a more demanding extended dataset that is useful for research purposes.
Result
  • A position paper on the Ataxia Global standard COAs will be drafted.