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The Friedreich’s Ataxia Health Index Study (FA-HI)

Title of Study: The Friedreich's Ataxia Health Index Study

Principal Investigator: Chad Heatwole, MD, MS-CI

Institutional Affiliation: University of Rochester, Department of Neurology

Study Description: This study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with FA. The results of the study will help guide future research involving FA patients through the development of a patient-reported measure of health.

The study involves completing a survey to include questions on demographics and symptoms of FA.

WHO CAN PARTICIPATE?

  • U.S. residents
  • Participants with a confirmed diagnosis of FA
  • Adults, ages 18 or older
  • Children, ages 8-17, with parental consent; if the child is age 13-17, only the child should complete the survey
  • Parents of children age 0-12; both parent and child can complete the survey for children ages 8-12.

Please see this Recruitment flyer to access the survey links.
 

 

CLIN-1601-102 - Larimar Therapeutics Phase I study of CTI-1601, a frataxin replacement therapy

Participants are needed for a Phase I research study to test an investigational medication in individuals with Friedreich's ataxia.

You May Be Eligible if You:

  • are 18 years of age or older,
  • have genetically confirmed Friedreich’s Ataxia with a copy of the genetic result (homozygous GAA repeat expansions), and
  • are able to go the distance of 25 feet with or without an assistive device or pushing oneself using a manual wheelchair.

Individuals should also be able to transfer from a bed to a chair with minimal assistance (e.g., being able to stand with support during a transfer) and perform basic daily care, such as feeding themselves and personal hygiene, with minimal assistance.

Please see this Recruitment Flyer for other Key Inclusion Criteria and contact information.

More information can also be found at Clinicaltrials.gov https://clinicaltrials.gov/ct2/show/NCT04176991.

Retrotope RT001-006 Phase 2/3 trial for protection against oxidative damage in the central nervous system

The Retrotope RT001-006 trial involves the study drug RT001, which may protect against lipid peroxidation, the process that is believed to cause disability in many neurodegenerative diseases, including Friedreich’s ataxia.

This study will involve five visits to a research clinic over a 12-month period. Each site visit can be done over multiple days. If you should decide to participate, you will be reimbursed for reasonable travel expenses.

To qualify, you must:

  • Have been diagnosed with Friedreich's ataxia
  • Be between 12 and 50 years old
  • Be able to walk at least 25-feet within 1 minute, with or without an assistive device
  • Not be actively enrolled in another clinical trial
  • Not have participated in the previous RT001 trial

 
For enrollment at Children's Hospital of Philadelphia only -
Please see this flyer to contact the study coordinator at CHOP.

For enrollment at our Long Beach, CA site -
Please see this flyer to contact the study coordinator.

For enrollment at our UCLA site -
Please see this flyer to contact the study coordinator.

For enrollment at other sites -
Please see this flyer 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



Part 2 of the Phase II MOXIe study (RTA 408 or omaveloxolone)

Description: FARA is excited to share news that Part 2 of the Phase II MOXIe study (RTA 408 or omaveloxolone), sponsored by Reata, is open, and needs 100 individuals with FA to participate. This is a randomized, placebo-controlled, double-blind, parallel-group study to evaluate the safety and efficacy of omaveloxolone (RTA 408) 150 mg in patients with Friedreich's ataxia. Participants will be randomized 1:1 to either receive omaveloxolone (RTA 408) 150 mg or placebo.

Key Criteria: Please see the study flyer below to learn about Inclusion and Exclusion Criteria.

Location: This is an international study with sites in the United States, Europe, and Australia.


Latest Friedreich's Ataxia - MOXIe Study Update:


Webinar with Dr. Colin Meyer of Reata and FARA reviewing MOXIe Part 1 study results and plan for Part 2 of the study:


Please review the study flyer below, if you are interested in the study or have questions about the study, we encourage you identify the site that is geographically closest to you and contact the study coordinator.


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