Working Groups (WGs)

Working Group 1

Working Group 1
WG Name Biosampling Standards
WG Leader Puneet Opal (Chicago, USA)
WG Objectives
  • Provide uniform protocols to all ataxia investigators for the collection and processing of biosamples for biomarker development.
Results
  • Generation of a comparison of protocols used by ataxia investigators in the USA and Europe to align the collection and processing of samples. These are currently under review.

Working Group 2

Working Group 2
WG Name Clinical Outcome Assessments (COAs)
WG Leader Thomas Klockgether (Bonn, 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 SCA Global standard COAs has been drafted and is currently under review and discussion by the COA working group.

Working Group 3

Working Group 3
WG Name MR Biomarkers
WG Leader Gülin Öz (Minneapolis, USA)
WG Objectives
  • Harmonize magnetic resonance imaging (MRI) and spectroscopy (MRS) data acquisition protocols for spinocerebellar ataxias across the globe.To accomplish this, the WG will provide guidelines for a core and an advanced MRI/MRS protocol designed to obtain structural, biochemical and functional MR biomarkers.

    Our guiding principles are:
    1) inclusivity while maintaining a minimum standard of data quality and
    2) to make use of existing optimized protocols established in other multi-site settings.

Results
  • To date, we have focused on outreach efforts to identify all parties who may be interested in joining the WG across the globe. We are collecting information on infrastructure at participating MR sites. In parallel, we are devising recommendations for optimum MRI/MRS protocols for SCAs: The Core protocol will include structural scans (T1&T2) of the brain, while the advanced protocol will include several modalities to monitor multiple aspects of the progressive SCA pathology: diffusion MRI, MRS, quantitative susceptibility mapping (QSM), resting state MRI.

Working Group 4

Working Group 4
WG Name Policy
WG Leader Holm Graessner (Tübingen, Germany)
WG Objectives
  • Draft, discuss and agree on SCA Global policies that all SCA Global investigators will have ato approve and sign,
  • Draft, discuss and agree on SCA Global SCA Global consortium agreement which all responsible representatives of clinical/research institutes will have to approve and sign.
Results (as of June 2019)
  • Formation of working group.
  • SCA Global policies currently work in progress.

If you are interested in participating in a working group , please contact the respective WG leader.