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
- Diseases
- Friedreich ataxia
- 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
Sites (14)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Murdoch Childrens Research Institute Coordinator of this site? Confirm its status | Parkville | Australia | Unknown status |
| CHUM - Hopital Notre-Dame Coordinator of this site? Confirm its status | Montreal | Canada | Unknown status |
| The Hospital for Sick Children Coordinator of this site? Confirm its status | Toronto | Canada | Unknown status |
| All India Institute of Medical Sciences(AIIMS) Coordinator of this site? Confirm its status | New Delhi | India | Unknown status |
| Auckland City Hospital Coordinator of this site? Confirm its status | Auckland | New Zealand | Unknown status |
| Emory University Hospital - Neurology Coordinator of this site? Confirm its status | Atlanta | United States | Unknown status |
| Ohio State University - Neurology Coordinator of this site? Confirm its status | Columbus | United States | Unknown status |
| University of Colorado Coordinator of this site? Confirm its status | Denver | United States | Unknown status |
| University of Florida - Neurology Coordinator of this site? Confirm its status | Gainesville | United States | Unknown status |
| University of Iowa Stead Family Children's Hospital Coordinator of this site? Confirm its status | Iowa City | United States | Unknown status |
| UCLA Ataxia Center Coordinator of this site? Confirm its status | Los Angeles | United States | Unknown status |
| St. Jude Children's Research Hospital Coordinator of this site? Confirm its status | Memphis | United States | Unknown status |
| Children's Hospital of Philadelphia - Neurology Coordinator of this site? Confirm its status | Philadelphia | United States | Unknown status |
| USF Ataxia Research Center Coordinator of this site? Confirm its status | Tampa | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.