|Working Group 1
|Clinical outcomes assesssments & registries
|Thomas Klockgether (Bonn, Germany)
Matthis Synofzik (Tübingen, Germany)
- 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.
- A position paper on the Ataxia Global standard COAs will be drafted.
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