Newsletter September 2023

  • Ataxia Webinars
  • Register for Ataxia Global Conference 2023
  • Save the Date: ICAR 2024
  • SCAview for AGI Members
  • Looking for CACNA1G GoF and SCA42ND Researchers
  • Become an AGI Member or Partner

Ataxia Webinars

Click on the webinar titles to open registration forms.

AGI Webinars

Register for our Young Investigator Webinars!

iScience: AGI YII Webinar Series on Hot Topics
Explore Your Future in Ataxia Research

Repeat-Expansions in Ataxias: Direct Sequencing, Detection by Short-Read WES/WGS vs. Long-Read WGS, and Novel Forms
Speakers: Matthis Synofzik (Tübingen, Germany), Stephan Zuchner (Miami, USA), Matt Danzi (Miami, USA), Brent Fogel (Los Angeles, USA), David Pellerin (London, UK) - WG6: Next-generation genomics and platforms
Tuesday, 12 September 2023, 8-9 pm CEST

Quantative Gait and Balance Outcomes for Ataxia Trials
Speakers: Fay Horak (Oregon Health and Science University, USA); Winfried Ilg (University of Tuebingen, Germany) - WG4 Digital-motor biomarkers
Tuesday, 19 September 2023, 5-6 pm CEST

Future Projects for Biomarker Group
Speakers: Filippo Santorelli (Pisa, Italy), David Mengel (Tübingen, Germany), Puneet Opal (Chicago, USA) - WG2 Molecular biomarkers & biosampling
Tuesday, 24 October 2023, 5-6 pm CEST

ERN-RND Webinar

Friedreich's Ataxia
Speaker: Kathrin Reetz (Aachen, Germany)
Tuesday, 12 September 2023, 3-4 pm CEST

Register for Ataxia Global Conference 2023

Ataxia Global Initiative cordially invites you to the next Ataxia Global Conference:

Best endpoints: an evidence-based analysis and consensus suggestion for the currently best endpoints in each ataxia trial outcome domain.

The conference will take place online.

During the conference, the AGI working groups will present their work on best endpoints in their ataxia trial outcome domain. An endpoint is a defined parameter intended to reflect an outcome of interest that is statistically analyzed to address a particular research question (BEST 2016). The definition of endpoints is therefore of a special interest for clinical trials.

The work on best points will be presented for the patient-reported outcome, digital-motor gait and balance measures, NfL and MRI domains with a special interest in the patient meaningfulness and include consensus suggestion on the best endpoint in each domain. The endpoints will be presented for different aspects of a trial scenario with partial application for disease-modifying drug development.

15 November 2023, 12 – 2:45 pm CET
12:00 – 12:15 pm CET: Best Endpoints – developing an AGI Perspective
12:15 – 1:15 pm CET: Digital-Motor Gait/Balance Measures
15 min break
1:30 – 2:30 pm CET: Patient-Reported Ataxia Outcomes
2:30 – 2:45 pm CET: Wrap Up

16 November 2023, 8 pm – 10:35 pm CET
8 pm – 8:05 pm CET: Best Endpoints – interim update
8:05 – 9:05 pm CET: MRI
15 min break
9:20 – 10:20 pm CET: NfL
10:20 – 10:35 pm CET: Wrap Up

Save the Date for ICAR 2024

Save the Date for the International Congress for Ataxia Research 2024.
It will take place on 12-15 November 2024 in London, UK.

SCAview for AGI Members

AGI members can apply for free (non-commercial) access to SCAview.

The main user group for SCAview are scientists and clinicians working on spinocerebellar ataxia type 1, 2, 3, and 6. With the tool, you have a unique possibility to browse large SCA1, 2, 3, and 6 datasets.

Are you an AGI member or work for an AGI Partner Organization? You are welcome to apply for SCAview:

Looking for CACNA1G GoF and SCA42ND Researchers

Avery’s family is looking for CACNA1G GoF and/or SCA42ND researchers. Avery was diagnosed in May this year when she was 5 months old. She and her parents Jennifer and Allen live in Los Angeles, California. They can be reached at and would be forever grateful to speak with you.

Become an AGI Member or Partner

Become an AGI member or partner!
The application for membership (as individual) and partnership (as organization) of the AGI is available on our website. More information about membership and partnership can be found in our charter.
As a member, you can join the AGI working groups, nominate and vote for new members for the AGI Steering Committee, and attend our business meetings.

Contact us