Therapeutic area
Friedreich ataxia
Evaluating wearable measures of mobility and upper limb function in children and adults with Friedreich ataxia.
Friedreich ataxia (FA) is an inherited condition that progressively affects balance, walking, limb coordination, and speech. It is caused by changes in both copies of the FXN gene and can also involve heart disease, scoliosis, and diabetes. Symptoms and their progression vary from person to person.
Wearable measures associated with FA severity
A Communications Medicine study of 39 people with FA found that seven days of wearable data were associated with clinical severity scores and biological measures. The findings support further evaluation of wearable measures in FA research.
Our research in FA
Our FA research focuses on two areas: evaluating wearable measures of mobility and upper limb function, and building longitudinal datasets to complement clinical assessments in children and adults with FA.
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Wearable monitoring
Digital measures for FA research
Evaluating how wearable measures of everyday movement relate to clinical assessments and changes in function over time.
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Longitudinal datasets
Longitudinal data to complement clinical trials
Repeated measurements of daily activity and movement to support research on function between clinical visits.
Digital measures for FA research
We are developing wearable measures to study everyday movement in children and adults with FA. Pendant and wrist sensors record activity and upper limb movement during home monitoring periods, adding context to clinical assessments. Longitudinal research is evaluating their ability to detect changes in function.
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PAMSys
Pendant-based monitoring of physical activity, walking, posture, and postural transitions during daily life.
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PAMSys ULM
Wrist-worn monitoring of upper limb activity and movement patterns consistent with goal-directed use during everyday activities.
Evidence supporting digital measures in FA
Published work provides initial evidence linking wearable measures to established FA assessments. These findings support further study of clinical validity; sensitivity to progression and treatment response requires longitudinal evaluation.
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Disease severity
Estimating clinical severity
Models incorporating wearable data estimated clinical severity scores within the study cohort using cross-validation. This analysis assessed current severity rather than predicting future progression.
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Upper limb function
Upper limb movement monitoring
A 2024 AAN conference abstract reported associations between wrist-derived movement features and clinical scores in neurological disorders, including FA, after one week of monitoring.
Our clinical study in FA
BioDigit FA evaluates wearable measures alongside clinical assessments over time. The figures below describe the BioSensics wearable cohort; the linked registry covers the broader UNIFAI natural-history study. These figures are distinct from the published seven-day analysis of 39 participants.
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Observational study
BioDigit FA
- Parent study registry
- NCT06016946 (opens in a new tab)
- Reported wearable cohort
- 58
- Reported follow-up
- 24 months
Our research partners
Our FA research brings together clinical researchers and patient advocacy organizations.
- Friedreich's Ataxia Research Alliance
- Muscular Dystrophy Association
- Perelman School of Medicine at the University of Pennsylvania
Selected publications and presentations
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Communications Medicine, 2024
At-home wearable-based monitoring predicts clinical measures and biological biomarkers of disease severity in Friedreich's Ataxia (opens in a new tab)
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MDS Congress abstract, 2024
Predicting Disease Severity in Friedreich's Ataxia through Wearable Monitoring and Machine Learning (opens in a new tab)
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MDA Conference abstract, 2024
Continuous Monitoring of Physical Activity to Predict Friedreich Ataxia Symptoms (opens in a new tab)
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AAN abstract in Neurology, 2024
Continuous Monitoring of Upper Limb Function in Neurological Disorders Using a Wearable Sensor (opens in a new tab)
Advance FA research with digital measures
Bring everyday function into FA research. Contact our team to discuss research collaborations, study protocols and data access, or the use of digital measures in your clinical studies.