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FARAFARA Cure FA

Instrumented Data Exchange for Ataxia (IDEA study) Johns Hopkins

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.

Clinical Outcome Measures in Friedreich’s Ataxia: a natural history study

The Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA) is an international network of clinical research centers, where physicians, researchers and patients work together to advance treatments and best practices for management and treatment of Friedreich's ataxia. The Children’s Hospital of Philadelphia (CHOP) is one of the sites participating in this network. The CCRN in FA is funded by the Friedreich’s Ataxia Research Alliance (FARA). The research centers involved in this network, including CHOP, run a study called Clinical Outcome Measures in Friedreich’s Ataxia (FACOMS). This is a natural history study with the following objectives:

  • Collect data every 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
  • Expand the network of clinical research centers working on Friedreich ataxia
  • 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

You may be eligible to take part if:

  • You have a confirmed diagnosis of Friedreich’s ataxia
  • A parent/guardian gives permission for you to participate if you are under 18 years of age

The sites in this network provide opportunities for individuals to participate in the FACOMS study annually.

If you would like to participate in this study at the Children’s Hospital of Philadelphia, please call the CHOP Friedreich Ataxia Program number at 267-426-7538. The Principal Investigator at this site is Dr. David Lynch.

For a list of additional FACOMS Study Sites, please refer to the FARA website: http://www.curefa.org/network

Thank you for your ongoing support of clinical research in Friedreich ataxia.

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.

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