Ataxia Research Studies and Clinical Trials

The team at the Johns Hopkins Ataxia Center is conducting several research studies, including clinical trials, that are looking for participants. If you are interested in participating in a study, please reach out to the study contact. 

Natural History Study of Genetic Modifiers in SCA (NA_00034854)

Contact: Vanessa Nesspor (410-616-2815 or [email protected])
Principal Investigator(s): Chiadi Oniyike, M.D. and Liana Rosenthal, M.D., Ph.D.
Eligibility Criteria: People with ataxia ages 6 and older. Positive genetic testing either in participant or family for SCA 1, 2, 3, 4, 5, 6, 7, 8, 10.
What to expect: Blood sample, neurological exam, and other tests; study visit every 12 months.
Compensation: $50 per session.
More information on clinicaltrials.gov: NCT01060371

Biomarkers for Ataxia and Multiple System Atrophy (IRB00205116)

Contact: Ashley Kucharski ([email protected] or 202-838-6458)
Principal Investigator: Liana Rosenthal, M.D., Ph.D.
Eligibility Criteria: Cerebellar ataxia of unknown etiology with symptoms for at least 5 years or healthy individuals between the ages of 55 and 75 who can participate as healthy controls.
What to expect: Blood draw, lumbar puncture, cognitive testing and optional skin biopsies; 1 in-person visit with possible yearly follow ups.
Compensation: $100 for visit with lumbar puncture; additional $100 if opting for skin biopsies; $25 for subsequent visits.

More information on ataxia.org.

Multimodal Bio-Signal Repository for Parkinson Disease and Movement Disorder (IRB00234370)

Contact: Seneca Motley (667-776-1908 or [email protected])
Principal Investigator: Ankur Butala, M.D.
Eligibility Criteria: Established diagnosis of ataxia or other movement/neuro degenerative disorder. English native speaker.
What to expect: one required visit lasting ~60-75 minutes.
Compensation: parking reimbursement

Identification of Relationships of Abnormal Eye Movements and Activity in Individuals with Balance Disorders Including Ataxia and Vestibular Dysfunction (IRB00246479)

This study aims to understand the relationships of oscillopsia symptoms (bouncy vision and/or dizziness), eye/head coordination and balance and gait in people with ataxia.

Contact: Jennifer Millar ([email protected])
Principal Investigator: Jennifer Millar, PT
Eligibility Criteria: People diagnosed with ataxia 18-80 years old. Can walk without an assistive device. English native speakers.
What to expect: Measure of balance, gait as well as vestibular function will be collected within one 2-hour session.
Compensation: No reimbursement. Parking pass and test results are provided.

Mechanisms and Rehabilitation of Cerebellar Ataxia (IRB00182673)

This research is being done to learn about how people control movement and how movement is altered when parts of the brain are damaged.

Contact: Jennifer Keller, PT, MS ([email protected])
Principal Investigator: Amy Bastian, Ph.D.
Eligibility Criteria: People with cerebellar ataxia 4-85 years old

More information on kennedykrieger.org

Motivated Decision-Making and Performance Cerebellar Ataxia (IRB00283000)

This research is being done to understand physical and mental fatigue in people with cerebellar ataxia.

Contact: Jennifer Keller, PT, MS ([email protected])
Principal Investigator(s): Vikram Chib, Ph.D.
Eligibility Criteria: People with cerebellar ataxia 18-75 years old

Clinical Trials at Johns Hopkins

chemist with a vial of medication

Johns Hopkins Medicine is home to more than 1,000 ongoing clinical trials for a variety of conditions. Our easy-to-use clinical trials website offers many ways to search for studies recruiting participants, including healthy volunteers.