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FA Global Patient Registry

Join The Registry

Information on Individuals Enrolled in the Registry

   
 

Welcome to the FA Global Patient Registry.

The purpose of the registry is to collect some basic information on individuals with FA. This information will be used to facilitate and expedite clinical trials and get us all closer to treatments for FA. Basically, this is a way for you to get your name and contact information to researchers who will be conducting clinical research trials. Recruitment for clinical trials can often take a long period of time especially for a rare disease like FA. Your participation in this registry could help speed up that process considerably, because your information would be shared with scientists and companies recruiting patients for FA clinical trials in the near future.

This registry is only for individuals diagnosed with Friedreich's ataxia.

Preparing to register: When you register you will be asked about your contact information and about your diagnosis. For example, there are questions about your age of onset and genetic testing for FA. For individuals less than 18 years of age, we request that your parent or guardian provide consent for entrance into the registry.

Information on Registry Participants

Number of Individuals Enrolled in the Patient Registry: 3036




Geographic Information on Individuals in Registry

 CountryPatients 
expand United States1620
expand Brazil411
expand Canada118
expand United Kingdom96
expand Australia95
expand India76
expand Spain73
expand Ireland52
expand France46
expand Italy44
expand Sweden27
expand Greece24
expand Mexico23
expand Argentina21
expand South Africa21
expand Germany19
expand Colombia17
expand New Zealand17
expand Pakistan14
expand Iran12
expand Switzerland12
expand Netherlands11
expand Portugal11
expand Turkey11
expand Belgium10
expand Chile10
expand Romania8
expand Austria7
expand Lebanon7
expand Poland7
expand Serbia7
expand Albania6
expand Slovenia6
expand Croatia5
expand Norway5
expand Russia5
expand Bulgaria4
expand Cyprus4
expand Denmark4
expand Israel4
expand Morocco4
expand SAUDI ARABIA4
expand Bahrain3
expand dominican republic3
expand Ecuador3
expand egypt3
expand Uruguay 3
expand Czech Republic2
expand Egypt2
expand Jordan2
expand Lithuania2
expand Qatar2
expand Seychelles2
expand Venezuela2
expand Afghanistan1
expand Armenia1
expand Bosnia Herzegowina1
expand Ceska republika1
expand China1
expand Costa Rica1
expand Denmark1
expand Finland1
expand Hong Kong1
expand Hungary1
expand Indonesia1
expand Israel1
expand Kosova1
expand MOROCCO1
expand Mozambique1
expand Nepal1
expand PANAMA1
expand Paraguay1
expand Roumania1
expand Scotland1
expand Sri Lanka 1
expand Syria1
expand Yemen1