Speech-ATAXIA- a multinational, multilanguage consortia for speech in hereditary ataxias

Goals:
-
Precisely describe longitudinal changes occurring in speech as disease progresses,
- Identify predictors of progression and discover if critical milestones exist in the disease course,
- Explore how communication decline shapes quality of life and disease management,
- Strengthen genotype-phenotype associations to create disease specific profiles.

Description:
Speech impairment is ubiquitous in ataxia yet it is rarely investigated and when considered, cohort studies are often limited in size and restricted to specialized centres, with very limited longitudinal or natural history data available. This knowledge gap is exacerbated by a lack of harmonisation, standardisation, expertise and resources that results in fragmented and piecemeal research.

In response to these challenges, we established SpeechATAXIA, an overarching consortium with sites across Europe, North and South America, Australia and New Zealand.

At a methods level, we will:
(1) Use a combination of sophisticated signal processing and natural language processing analytics to provide new insights into speech in ataxia,
(2) Use machine learning and time series statistical models to identify speech features that best track disease related change and differentiate ataxia types.
(3) Utilise a combination of clinic and home-based digital speech assessments for enhanced disease monitoring and enriched data on stability/variability, between clinic visits.

We are looking for: New sites and collaborators to contribute to data collection. In particular we are seeking cross-linguistic partners in France, the Netherlands, Italy, Portugal, China, Hong Kong, Japan, Czech Rep, and other jurisdictions not already covered by the group.

We can help you out with: Protocol design, software for standardization, data capture and storage. Objective data analysis

Cohorts used All SCAs and ARCAs
Funding available? Proposal submitted
Trial readiness category 4:        direct preparation of treatment trials

Contact persons:
Adam Vogel
The University of Melbourne, Melbourne, Australia

Further project partners:
Cynthia Gagnon
Centre intégré universitaire de santé et de services sociaux du Saguenay-Lac-St-Jean, Chicoutimi, Canada
Martin Delatycki
Murdoch Children's Research Institute, Melbourne, Australia
Luis Velazquez-Perez
University Hospital of Holguin, Holguin, Cuba
Anoopum Gupta
Massachusetts General Hospital, Boston, USA
Christopher Gomez
University of Chicago, Chicago, USA
Richard Roxburgh
Auckland City Hospital, Auckland, Australia
Matthis Synofzik
University of Tübingen, Tübingen, Germany
Redenlab Inc