TRACK-FA
is a natural history study to investigate brain and spinal cord changes in individuals with Friedreich ataxia. If imaging differences in the central nervous system are correlated with progression of FA, these differences could be used in future clinical trials to monitor treatment outcome.
As of March 2023, this study has enrolled about 200 participants however we still need another 100. The goal is to enroll 200 people with FA and 100 controls.
The University of Minnesota and McGill University Montréal sites have immediate availability.
Study Website
TRACK-FA Informational Webinar
There are 3 study visits, each approximately 12 months apart. At each study visit, participants will be asked to complete -
- Neurologic and functional testing
- Blood draw
- Brain and spinal cord MRI scan
The study needs volunteers who either have a diagnosis of Friedreich ataxia (FA) or who do not (Controls). Controls will be healthy volunteers who are age- and gender-matched to the FA cohort.
Inclusion criteria (partial):
- Age >5 years
- Individuals with FA must have a genetic confirmation, GAA repeat expansion >55 in length on both alleles of the FXN gene or GAA repeat expansion on one allele and another mutation type on the other allele (e.g., point mutation, gene deletion). If you don’t have your genetic testing report or didn’t have a test that reported repeat lengths you can be re-tested as part of the study protocol.
- Individuals with FA should have age of disease onset less than 25 years.
- Individuals with FA should have Disease duration less than 25 years.
Exclusion criteria (partial):
- MRI contraindications such as pacemaker, other metallic surgical implants, metallic braces.
- Pregnancy
- Other ongoing medical conditions, including psychiatric and neurological diagnoses (speak with the site investigator).
Additional information can be found on the clinicaltrials.gov website (NCT04349514)
Compensation is provided for time and travel expenses.
Track-FA Newsletters
December 2023 Newsletter
August 2023 Newsletter
December 2022 Newsletter
July 2022 Newsletter
Sites open for enrollment
University of Florida, Gainesville
Principal Investigators: Sub H Subramony, MD, Thomas Mareci, PhD, Manuela Corti, PhD
Study coordinator: Mackenzi Coker
Email:
Phone: (352) 294-8754
University of Minnesota, Minneapolis
Principal Investigators: Pierre-Gilles Henry, PhD, Christophe Lenglet, PhD
Study coordinator: Diane Hutter
Email:
Phone: (612) 625-2350
More information about this team
Children’s Hospital of Philadelphia
Principal investigators: William Gaetz, PhD, Timothy PL Robets, PhD, David Lynch, MD, PhD
Study coordinator: Victoria Kaufman
Email:
McGill University, Montréal, Canada
Principal Investigators: Massimo Pandolfo, MD; Alain Dagher, MD; David Rudko, PhD
Study coordinator: Christian Rampal
Email:
Phone: +1-416-659-0750
Monash University, Clayton, Victoria, Australia
Principal Investigators: Nellie Georgiou-Karistianis, PhD, Ian Harding, PhD, Louise Corben, PhD, Martin Delatycki, PhD
Study coordinator: Helena Bujalka
Email:
Phone: +61 3 9905 3487
Department of Neurology, RWTH Aachen University
Aachen, Germany
Principal Investigators: Kathrin Reetz, MD, Imis Dogan, PhD, Sandro Romanzetti, PhD, Jörg B Schulz, MD
Study coordinator: Dr. Imis Dogan
Email:
Phone: +49-241-80 80719
University of Campinas, Brazil
Principal investigators: Marcondes C. França, MD, PhD and Thiago JR Rezende, PhD
Study coordinator: Cynthia Silveira, PhD
Email:
Phone: +55 19 35218036
Anyone considering participating in a clinical trial should discuss the matter with his or her physician. FARA does not endorse or recommend any particular studies.
