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FARAFARA Cure FA

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.

Neurological Measures of Progression in Children with FA

Description:
Children's Hospital of Philadelphia, University of Florida and University of California Los Angeles are seeking children with FA for a 3 yr study to help advance our understanding of disease progression and validate outcome measures that can be used in future clinical trials.

This study is funded by the Food and Drug Administration (FDA) and the Friedreich’s Ataxia Research Alliance (FARA).

It is a natural history study with the following objectives:

Collect data twice a year to understand progression of FA and be able to quantify change in progression over time. Develop and validate outcome measures (timed walk tests, vision tests) that can be used in future clinical trials Make design and implementation of clinical trials more efficient and effective Collect biological samples such as cheek swabs and blood to identify and study biomarkers involved with the disease process and quantify the change in these markers over time Analyze disease progression in FA affected tissues using innovative and noninvasive measures

Key Inclusion Criteria:
You/your child have a confirmed diagnosis of Friedreich’s ataxia
You/your child are between the ages of 2 and 18 years of age

To learn more about the Inclusion and Exclusion Criteria and the process for participation in the study, please contact the Clinical Research Coordinator with any questions.

Locations:
Children's Hospital of Philadelphia, PA - View the CHOP Study Flyer
Contact: Cassandra Strawser, 215-590-2314 - strawserc@email.chop.edu

University of California Los Angeles, CA
Contact: Aaron Fisher, 310-206-8153 - adfisher@mednet.ucla.edu
or Arjun Sarkar - asarkar@mednet.ucla.edu

University of Florida, Gainesville, FL
Contact: Blake Meyer, (352) 294-8754 - blakemeyer@ufl.edu


For more information visit Clinicaltrials.gov - https://www.clinicaltrials.gov/ct2/show/NCT03418740

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