Newsletter July 2022

  • Advisory Committee for Therapeutics (ACT): Call for applications
  • Ataxia Global Conference 2022
  • AGI’s Tools & Methods workshop series
  • AGI Webinars
  • News from the AGI office
  • Reminders

Advisory Committee for Therapeutics:

Call for applications

The AGI is currently implementing an Ataxia Advisory Committee for Therapeutics (Ataxia-ACT), similar to the Treat-NMD ACT, to optimise the planning and execution of early stage and later phase clinical research on (all forms of) ataxias.
The main objective is to provide a valuable resource and service to the ataxia community by giving transparent, unbiased, multi-stakeholder and multidisciplinary expert advice to optimise research, by either a) steering studies along a realistic and well-informed plan to clinical trial/later phase clinical activity or b) encouraging a change of direction or approach, to avoid failure further down the line.

The first Ataxia-ACT meeting is being planned for December this year.
If you wish to submit an application to be reviewed by the Ataxia-ACT, please contact Holm Graessner (AGI secretariat) for further information and for the Ataxia-ACT pre-application form.

Ataxia Global Conference 2022

Registration for the Ataxia Global Conference 2022 is now open!

The conference will take place on Friday and Saturday 4-5 November 2022 at Renaissance Dallas Addison Hotel in Dallas, Texas, USA, directly following the International Congress for Ataxia Research (ICAR). The Ataxia Global Conference brings together academia, industry as well as patient advocacy organisations and will focus on trial-readiness for ataxias. Delegates may be interested in attending both conferences as the programmes are distinct and complimentary to each other.
A preliminary programme of the Ataxia Global Conference 2022 is available here. More information can be found here.

AGI’s Tools & Methods workshop series

We are happy to announce the start of a new Ataxia Global Initiative activity format: the Tools & Methods workshop series. This workshop series will discuss and improve trial-readiness methods with regard to their novel (or improved) application in the ataxia field.
Newsletter Picture Workshops
Matthis Synofzik & Andreas Traschütz (AGI Working Group 1) host the first topic in this series:
Longitudinal progression modelling of COAs in ataxia – differential value vs. limitations of change models, slope models, and disease course mapping, exemplified for degenerative ataxias.

There will be three sessions on this topic (each 20 min input talk, 40 min discussion).

You are welcome to register for all three sessions:
Session 1
Date: 15th of July 2022, 5-6 pm CEST
Speaker: Christian Rummey (Clinical Data Science GmbH, Basel, Switzerland)
Christian Rummey
Session 2
Date: 22th of July 2022, 5-6 pm CEST
Speaker: Dieter Hilgers (University of Aachen, Aachen, Germany)
NEW! Session 3
Date: 29th of July 2022, 5-6 pm CEST
Speaker: Sophie Tezenas du Montcel (Sorbonne University, Paris, France)
The subtopics of the three workshops will be:
Selection of models, testing of biological and clinical stratification,implications for trial size estimation, and integrated simultaneous analysis of multiple outcomes.

The workshop is free of charge and open to everybody specialized in the ataxia trial-readiness field. For more information, please visit our website:
We’re looking forward to your attendance and a fruitful & lively discussion!

All AGI working-groups and individual members are warmly invited to propose topics (and also host) future Tools & Methods workshops as well! Contact the AGI office:

Webinar series

Missed one of our previous webinars on various #ataxia research topics? They have all been recorded. Visit our website for the overview.

1. Magnetic resonance imaging in clinical care and research of ataxias.
2. NGS analysis in ataxias: what it is and how it is done.
3. Standard clinical assessment in ataxia.
4. Digital-motor biomarkers in ataxia: introduction and overview across motor domains.
5. Fluid biomarkers for trial readiness in ataxia.

News from the AGI office

We are happy to introduce you our new project manager Ira Eberhardt (she/her).
Ira started her work in June 2022 and will be responsible for all AGI related matters.
You can contact Ira via AGI email address

Welcome on board, Ira!
Foto Ira privat_2022


Become an AGI member or partner!
The application for membership and partnership of the AGI is now open on our website. More information about membership and partnership can be found in our charter.
As a member, you can nominate and vote for new members for the AGI Steering Committee, and you will get an invitation for the business meeting during the Ataxia Global Conference.

Note that everyone who is part of an AGI Working Group should apply for AGI membership before September 2022!
Join a Working Group
Would you like to join an AGI Working Group? Please fill out the survey using the link below to provide us with your information.
Write for SCAsource
AGI has entered into a partnership with SCAsource, a website where research on ataxias is written in plain language by scientists.

AGI aims to contribute to the goals of SCAsource, and invites you to contribute to this website as a volunteer writer or translator. You can find more information about this process here.

Additionally, SCAsource is looking for ataxia research labs to be profiled on their website. Start the process of having a profile written about your lab by filling out this form.

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