Instrumented Data Exchange for Ataxia Study

a study on Spinocerebellar Ataxia Machado–Joseph Disease Friedreich's Ataxia

Summary

Eligibility
for people ages 12-75 (full criteria)
Healthy Volunteers
healthy people welcome
Location
at UCLA
Dates
study started
estimated completion
Principal Investigator
by Susan Perlman, MD (ucla)

Description

Summary

This research study is testing body-worn sensors to measure movement during simple tests of coordination, in order to evaluate the progression and severity of ataxia.

Official Title

APDM Instrumented Data Exchange for Ataxia (IDEA) Study

Keywords

Spinocerebellar Ataxia Type 1, Spinocerebellar Ataxia Type 2, Spinocerebellar Ataxia Type 3, Spinocerebellar Ataxia Type 6, Friedreich Ataxia, Ataxia, Cerebellar Ataxia, Spinocerebellar Ataxias, Spinocerebellar Degenerations, Machado-Joseph Disease, Spinocerebellar Ataxia-1, Spinocerebellar Ataxia-2, Spinocerebellar Ataxia-3, Spinocerebellar Ataxia-6, Freidreich's Ataxia

Eligibility

You can join if…

Open to people ages 12-75

  • SCA 1, 2, 3, 6, and FA with mutations in the pathogenic range confirmed from genetic testing
  • SCA: aged 18-75 years
  • FA: aged 12-30, diagnosed between ages 5-25
  • community dwelling
  • physically/cognitively capable of consenting/assenting and complying with the protocol based on investigator's judgement
  • able to walk independently 10 yards without an assistive device
  • able to sit or stand unassisted for 30 seconds
  • no other neurological or musculoskeletal disorder that could affect mobility
  • no other history of head injury, vestibular function, stroke, or other disorders that could affect mobility
  • willing and able to participate in a 2-year study
  • consent to be video recorded while performing study assessments

You CAN'T join if...

  • dementia that limits subjects' ability to follow directions
  • pain that limits mobility
  • SCA: enrolled in a clinical drug trial

Locations

  • University of California-Los Angeles accepting new patients
    Los Angeles California 90095 United States
  • Oregon Health & Science University accepting new patients
    Portland Oregon 97239 United States

Lead Scientist at University of California Health

  • Susan Perlman, MD (ucla)
    HS Clinical Professor, Neurology, Medicine. Authored (or co-authored) 136 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
University of Chicago
ID
NCT04268147
Study Type
Observational
Participants
Expecting 144 study participants
Last Updated