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Newsletter March 2024
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- Launch of Ataxia Advisory Committee for Therapeutics
- New Working Group "Patient-Reported Experience & Outcome Measures"
- Relaunch of AGI WG 5 "Model System & Preclinical Trials"
- ICAR 2024 - Abstract Submission & Registration open!
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Launch of Ataxia
Advisory Committee for Therapeutics
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AGI is pleased to announce that in 2024, the Ataxia Advisory Committee for Therapeutics (Ataxia-ACT) will have its first review session.
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The Ataxia-ACT is one of AGI’s trial readiness services. Its main objective is to review and provide objective advice on the planning and execution of preclinical and clinical drug development programs for (all forms of) ataxias.
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The Ataxia-ACT is a valuable resource and service to you. We provide transparent, unbiased, multi-stakeholder and multidisciplinary expert advice to optimize 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.
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New Working Group
"Patient-Reported Experience and Outcome Measures"
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The AGI is launching a new Working Group “Patient-reported experience & outcome measures” in ataxias.
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This WG aims to promote the role of patient report in the assessment and trials of ataxia. The prioritary aim is to define a graded catalogue of patient-reported outcome measures (PROM) focused on collecting patient perspectives on aspects of health status. Secondarily, this WG may also extend to patient reported experience measures (PREM) of health care.
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These instruments may serve as a standard for future clinical trials and sharing of observations at a global level. Starting from review of existing evidence and input on theoretical frameworks, the work of this WG will be directed by results obtained in each step.
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Initiators: Laura Bannach Jardim (Porto Alegre, Brazil), Tanja Schmitz-Hübsch (Berlin, Germany), Giulia Coarelli (Paris, France), and Jonas Saute (Porto Alegre, Brazil).
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Interested in participating in this working group?
Experts in this area, incl. ICF (International Classification of Disability and Function) and concept elicitation, are welcome to join!
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The first WG meeting will be on 15 April 2024, 3-4 pm CEST.
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Relaunch of WG 5
"Model Systems & Preclinical trials"
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AGI started a relaunch of our working group 5 “Model systems & preclinical trials”. The new WG Leads are:
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- Magda Santana (Center for Neurosciences and Cell Biology, University of Coimbra, Portugal)
- Jeannette Hübener-Schmid (University Hospital Tübingen, Germany)
- Ronald Buijsen (LUMC, Leiden, the Netherlands)
- Thorsten Schmidt (University Hospital Tübingen, Germany)
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Are you interested in the goals described below and have experience in the topic?
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📢You are welcome to join the working group!
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For AGI members or employees of an AGI partner organization:
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ICAR 2024 - Abstract Submission
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Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) are partnering to host the International Congress for Ataxia Research (ICAR) 2024. This event will be held November 12–15 in London at the Leonardo Royal Hotel London Tower Bridge.
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ICAR 2024 will be the place to share the latest ataxia research, including updates on Friedreich's ataxia, SCAs 1, 2, 3, 6, 7, and more. Attendees will hear the latest developments in novel treatment approaches, clinical trial results, and scientific debates from leading ataxia researchers. There will also be plenty of opportunities to network with academic and industry leaders, with a program for junior/trainee researchers organized by a Trainee Organizing Committee.
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ICAR 2024 will include plenary sessions, parallel sessions, workshops, and poster sessions. Plenary sessions will feature one invited speaker and talks selected from submitted abstracts. Following the success of ICAR 2022, a panel discussion will be held with individuals affected by Ataxia and an interactive debate session. For a full list of session topics and workshops visit: ataxiacongress.org
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Abstract Submission Instructions
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To submit an abstract click the button below. You will be prompted to create a login for the conference abstract submission software Ex Ordo. Abstracts can be submitted under the following topics:
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- Advances in genetics and diagnostics
- Cerebellar neurodevelopment and cognitive disorders
- Emerging and existing therapeutics – pre-clinical research
- Emerging and existing therapeutics – clinical research
- Disease mechanisms
- Cerebellar circuits and function
- Cellular and animal models
- Biomarkers and clinical outcomes
- Imaging
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- Abstract title should be a maximum of 150 characters (including spaces)
- All authors must be listed, and one author noted as the presenting author.
- Each author’s title and institution should be noted
- Abstract text must be limited to 300 words and should include the following paragraphs: Methods, Results Discussion, and Conclusion
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Abstract Submission Schedule
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Abstract Submission & Registration Open
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Abstract Submission Deadline (11:59 pm ET)
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Abstract Acceptance Announced
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Thank You to Our Sponsors
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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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