| 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.
|
