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Weill Cornell Study of Cardiomyopathy

Description: The Department of Genetic Medicine at Weill Cornell Medical College is looking for patients with Friedreich’s Ataxia for a research study to compare and evaluate different tests in assessing the cardiac dysfunction that can occur with the disease. The study involves a single 2-day visit, with an overnight stay.

Key Criteria: Ages 18-30 years

Location: Weill Cornell Medical College (New York, NY)

Please review the study advertisement below and contact Michelle at (646) 962-2672 or miy2006@med.cornell.edu with any questions.


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Call for Patients with Friedreich ataxia Brain Imaging Study

Call for Patients with Friedreich ataxia Brain Imaging Study

Ages: 6-45

Location: Children's Hospital of Philadelphia (CHOP)

Details: The Children's Hospital of Philadelphia (CHOP) is recruiting patients with Friedreich ataxia (FA) for a brain imaging study in FA to better understand how the brains of people with FA process movement and sound.

Please see the study flyer below and contact the study coordinator Debbie Foerster from CHOP
Phone: (267) 426-7584   Email: foerster@email.chop.edu with any questions.

CHOP Brain Imaging Study Flyer (PDF)

University of Rochester announces FA Study

Ages: 6-40
Location: University of Rochester
Details: 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 and people without FA are needed for this study.
Read More...

Glycemic Index in Mitochondrial Disease

Ages: 7-65
Location: University of Pennsylvania
Details: The investigators are conducting a research study on nutrition in mitochondrial disease. The investigators are interested in the kind of carbohydrates that people eat. Carbohydrates are an important source of energy. Certain kinds of carbohydrates tend to raise blood sugar more in healthy people, and others tend to raise blood sugar less in healthy people. The investigators would like to know if by eating the "right" type of carbohydrate, people with mitochondrial disease can avoid high lactate levels, high blood sugar levels, and, later, low blood sugars.

In this study, this question will be answered by finding out how people with mitochondrial disease respond to two different test meals containing different kinds of carbohydrates. Neither participants nor the investigators will know which kind of test meal participants are eating.

Read More...

Retrotope Annouces a Study of RT001 in Patients with Friedreich’s Ataxia

A Randomized, Double Blind, Controlled, Study to Assess the Safety, Tolerability, and Pharmacokinetics of RT001 Administered to Patients with Friedreich’s Ataxia for 28 days

Ages: 18-50

Location: University of South Florida (Tampa, FL) and Collaborative Neuroscience Network, LLC. ("CNS") in Long Beach, CA

Details: The University of South Florida seeks volunteers to participate in a clinical trial (A Randomized, Double Blind, Controlled, Study to Assess the Safety, Tolerability, and Pharmacokinetics of RT001 Administered to Patients with Friedreich’s Ataxia for 28 days; clinicaltrials.gov) to test the safety and tolerability of a an investigational drug given to people with Friedreich’s ataxia. The level of the investigational drug will be measured in the blood.  

You will need to follow a diet low in polyunsaturated fatty acids during the study. You will need to keep track of everything you eat each day using an online or paper food diary.

For more information, visit the study's clinicaltrials.gov site: www.clinicaltrials.gov

Please see the study flyer below and contact the study coordinator listed with any questions.

University of South Florida (PDF)

CNS Long Beach California (PDF)

 

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