Monitoring Ataxia in Daily Life with Wearable Sensors
The purpose of this research study is to see how symptoms of ataxia impact how you use your arms and hands during daily tasks in your home/community.
Link to enroll: https://redcap.link/aeli3vqq
Disclaimer: This research opportunity is not affiliated with NAF. We are sharing this information as a resource for the Ataxia community. Sharing this information does not imply endorsement by NAF.
About the Study
Eligible Ataxia Types
Spinocerebellar Ataxia Types 1, 2, 3, or 6 with genetic confirmation
Type of Study
Research Study
Age Range
18+
Study Start Date
01/30/2026
Estimated Completion Date
01/15/2028
IRB Approval #
202511063
Location(s)
Remote
Washington University in St. Louis
Contact Information
Chelsea Macpherson
PT-LangLab@email.wustl.edu
(314) 273-5661
What does participation in the study entail?
Participants in the study are assessed over one to two sessions (30-60 minutes total time), and you can choose for this assessment to either be in person or remote over videoconferencing. You can opt for an informational session with the research team to go over research procedures, and set up requirements, or simply proceed with the assessment. In the assessment, participants will be asked to complete questionnaires about their ability to use their arm and hand, as well as perform a brief thinking test, and a movement test using three wearable devices. After this, you will be asked to wear three wearable devices (the size of a wristwatch) one at your wrist, the other two worn opposite to your wrist at your hip and ankle for a maximum time of 1 week as you go about your daily life.
What are the potential benefits for participants?
While you will not directly benefit from being in this study, we hope that, in the future, other people might benefit from this study because of the knowledge gained from your participation in this study. The information collected from your participation will help us better understand how symptoms of ataxia impact how people use their arms and hands during daily life. This knowledge can contribute to the development of new ways to track movement and disease progression, and it may inform future treatment, rehabilitation approaches, and clinical trial measures.
What are the potential risks for participants?
• Participation in this study involves minimal risk.
• The primary risk is the possible disclosure of personal information. However, the research team takes extensive precautions to protect your privacy. Study data are stored using secure, HIPAA-compliant systems, and identifying information is removed whenever possible. Access to study records is limited to authorized research personnel.
• Some study activities include brief movement tests. As with normal daily activities, there is a risk of losing balance or falling with these tests. These activities are similar to movement performed in everyday life or during routine rehabilitation visits.
• Participants will also wear small sensors on the wrist, hip, and ankle. Wearing these sensors is similar to wearing a large watch or fitness tracker and is not expected to cause discomfort or harm.
Is there financial compensation?
Yes, $25
Who is eligible?
1.Age >18 years.
2. Has genetic confirmation of Spinocerebellar Ataxia Types 1, 2, 3, or 6.
3. Must have a presence of ataxia symptoms that affect upper limb movement (e.g., tremor, clumsiness, changes or variations in movement patterns) by self report.
4. Cannot have any other neurological, musculoskeletal, or medical conditions that affect the upper limb or general engagement in physical activity.
5. Cannot currently be, or planning to be pregnant.
6. Must reside in the United States.
7. Must be able to read and write in conversational English.
Additional Information or Resources
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