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Instrumented Data Exchange for Ataxia (IDEA study) U of Chicago

Participants are needed for a research study to test body-worn sensors to measure movement during simple tests of coordination. The goal of this study is to evaluate progression and severity of ataxia.

Eligibility criteria:

  • Be 12-30 years of age with FA diagnosed between ages 5-25
  • Be able to walk 10 feet independently
  • Be able to sit and stand unassisted for at least 30 seconds

Please see the attached flyer for additional details about the study and to contact the study coordinator.

Methods of measuring neuropathy study - University of Rochester

Volunteers, ages 6‐40 needed for Research Study

Dr. David Herrmann (Dept. of Neurology) at the University of Rochester in upstate NY, is conducting a research study of Friedreich’s Ataxia. The study will evaluate how well different methods work, to measure how Friedreich’s Ataxia progresses

People with FA are needed for this study

Study procedures:
  • Brief neurological exam
  • Sensory testing
  • Photograph a small area of your hand & foot, using a microscope that can look into the skin
  • Skin biopsy – optional for some subjects
Altogether, the each study visit takes up to 8 hours

You will be asked to complete 4 study visits over about 2 years.

You will be paid $100 for each completed study visit. Some funds are available for travel expenses for people who have FA and people in their family without FA.

For more information, please contact Beth Wood: (585)276‐6248 - ElizabethP_Wood@urmc.rochester.edu



Idebenone 2008 Phase 3 Follow-Up Study through CHOP and UCLA

The Children’s Hospital of Philadelphia (CHOP) is recruiting patients with Friedreich ataxia (FRDA) who previously participated in the 2008 phase 3 clinical trial of Idebenone for a new follow-up study. The purpose of the new study is to better understand how this specific group of patients have changed since the trial. There are no interventions or research visits in this study. The research team will mainly analyze previous medical records. If you (or your child) participated in the 2008 clinical trial of Idebenone, you are invited to contact Dr. Lynch or his study coordinator to learn more about this research project. This study is funded by the Friedreich Ataxia Research Alliance (FARA) and is taking place only at CHOP and the University of California Los Angeles (UCLA).

Please Click Here to learn more.

Idebenone 2005-06 Phase 2 Follow-Up Study through CHOP

The Children’s Hospital of Philadelphia (CHOP) is recruiting patients with Friedreich ataxia (FRDA) who previously participated in the 2005-06 phase 2 clinical trial of Idebenone for a new follow-up study. The purpose of the new study is to better understand how the cardiac phenotype of this specific group of patients has changed since the trial. There are no interventions or research visits in this study. The research team will mainly analyze previous medical records. If you (or your child) participated in the 2005-06 NIH clinical trial of Idebenone, you are invited to contact Dr. Lin and her study team to learn more about this research project. This study is funded by the Friedreich Ataxia Research Alliance (FARA) and is taking place only at CHOP.

Please Click Here to learn more.

Call for Patients with Friedreich ataxia with upcoming surgical procedure or existing tissue

The Children's Hospital of Philadelphia (CHOP) is recruiting patients with Friedreich ataxia (FA) who are planning to have a surgical procedure performed. These surgical procedures can include things like scoliosis surgery and tendon transfer surgery. We are also looking for patients with FA who have had biopsies performed in the past at other hospitals.

Please Click Here to learn more.

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