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Newsletter September 2023
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- 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
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Click on the webinar titles to open registration forms.
AGI Webinars
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iScience: AGI YII Webinar Series on Hot Topics
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Explore Your Future in Ataxia Research
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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
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Tuesday, 12 September 2023, 8-9 pm CEST
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Speakers: Fay Horak (Oregon Health and Science University, USA); Winfried Ilg (University of Tuebingen, Germany) - WG4 Digital-motor biomarkers
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Tuesday, 19 September 2023, 5-6 pm CEST
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Speakers: Filippo Santorelli (Pisa, Italy), David Mengel (Tübingen, Germany), Puneet Opal (Chicago, USA) - WG2 Molecular biomarkers & biosampling
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Tuesday, 24 October 2023, 5-6 pm CEST
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ERN-RND Webinar
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Speaker: Kathrin Reetz (Aachen, Germany)
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Tuesday, 12 September 2023, 3-4 pm CEST
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Register for Ataxia Global Conference 2023
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Ataxia Global Initiative cordially invites you to the next Ataxia Global Conference:
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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.
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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.
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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.
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15 November 2023, 12 – 2:45 pm CET
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12:00 – 12:15 pm CET: Best Endpoints – developing an AGI Perspective
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12:15 – 1:15 pm CET: Digital-Motor Gait/Balance Measures
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1:30 – 2:30 pm CET: Patient-Reported Ataxia Outcomes
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2:30 – 2:45 pm CET: Wrap Up
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16 November 2023, 8 pm – 10:35 pm CET
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8 pm – 8:05 pm CET: Best Endpoints – interim update
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10:20 – 10:35 pm CET: Wrap Up
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Save the Date for ICAR 2024
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It will take place on 12-15 November 2024 in London, UK.
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AGI members can apply for free (non-commercial) access to SCAview.
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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.
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Are you an AGI member or work for an AGI Partner Organization? You are welcome to apply for SCAview:
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Looking for CACNA1G GoF and SCA42ND Researchers
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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 cacna1g@gmail.com and would be forever grateful to speak with you.
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Become an AGI Member or Partner
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Become an AGI member or partner!
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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.
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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.
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