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NCT03090789Active, not recruiting

FA Clinical Outcome Measures

Clinical Outcome Measures in Friedreich's Ataxia

Source: ClinicalTrials.gov · Last updated 4 Oct 2024

Brief summary (registry, in English)

This multicenter natural history study aims to expand the network of clinical research centers in FA, and to provide a framework for facilitating therapeutic interventions. In addition, this study will lead to the development of valid yet sensitive clinical measures crucial to outcome assessment of patients with Friedreich's Ataxia. This study will support genetic modifier studies, biomarker studies, and frataxin protein level assessments by building a sample repository. This natural history study is no longer recruiting under this protocol NCT03090789 but remains actively recruiting under the harmonized study (UNIFAI) NCT06016946.

Status (registry)
Active, not recruiting
Study type
Observational
Enrollment
2000 (estimated)
First submitted
10 Mar 2017
Start date
1 Jan 2001
Primary completion date
1 Jan 2030
Lead sponsor
Friedreich's Ataxia Research Alliance
NCT number
NCT03090789

What you commit to

  • Study type: Observational
  • Planned participants: 2000
  • From 1 Jan 2001 to the primary completion date, 1 Jan 2030
  • 14 sites in 5 countries
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other illness

  • 1\) Signs or symptoms of severe cardiomyopathy (such as congestive heart failure)

Who the study is looking for

  • Males or females age 4 to 80 years.
  • Genetically confirmed diagnosis of FA (for carrier/control cheek swab and blood samples this is not required).
  • Clinically confirmed diagnosis of FA, pending confirmatory genetic testing through a commercial or research laboratory (for carrier/control cheek swab and blood samples this is not required).
  • Parental/guardian permission (informed consent) and if appropriate, child assent.

Age in the registry: 4 years to 80 years · Sex: All · Accepts healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (14)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Murdoch Childrens Research Institute
Coordinator of this site? Confirm its status
ParkvilleAustraliaUnknown status
CHUM - Hopital Notre-Dame
Coordinator of this site? Confirm its status
MontrealCanadaUnknown status
The Hospital for Sick Children
Coordinator of this site? Confirm its status
TorontoCanadaUnknown status
All India Institute of Medical Sciences(AIIMS)
Coordinator of this site? Confirm its status
New DelhiIndiaUnknown status
Auckland City Hospital
Coordinator of this site? Confirm its status
AucklandNew ZealandUnknown status
Emory University Hospital - Neurology
Coordinator of this site? Confirm its status
AtlantaUnited StatesUnknown status
Ohio State University - Neurology
Coordinator of this site? Confirm its status
ColumbusUnited StatesUnknown status
University of Colorado
Coordinator of this site? Confirm its status
DenverUnited StatesUnknown status
University of Florida - Neurology
Coordinator of this site? Confirm its status
GainesvilleUnited StatesUnknown status
University of Iowa Stead Family Children's Hospital
Coordinator of this site? Confirm its status
Iowa CityUnited StatesUnknown status
UCLA Ataxia Center
Coordinator of this site? Confirm its status
Los AngelesUnited StatesUnknown status
St. Jude Children's Research Hospital
Coordinator of this site? Confirm its status
MemphisUnited StatesUnknown status
Children's Hospital of Philadelphia - Neurology
Coordinator of this site? Confirm its status
PhiladelphiaUnited StatesUnknown status
USF Ataxia Research Center
Coordinator of this site? Confirm its status
TampaUnited StatesUnknown status

This page is information, not medical advice. Discuss any trial with your doctor.