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FARA PATIENT REGISTRY

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Information on Individuals Enrolled in the Registry

 
 


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Welcome to the Friedreich's Ataxia Research Alliance (FARA) 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. The homepage of this website also includes information on other patient registries and clinical trials.

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: 1938


Geographic Information on Individuals in Registry
 CountryPatients 
expand United States1235
expand Canada82
expand United Kingdom70
expand Australia56
expand Spain53
expand Brazil52
expand India42
expand Italy40
expand Ireland37
expand Sweden27
expand France21
expand Argentina15
expand Greece14
expand Mexico12
expand New Zealand12
expand Colombia11
expand South Africa11
expand Pakistan10
expand Switzerland10
expand Germany6
expand Lebanon6
expand Netherlands6
expand Portugal6
expand Romania6
expand Austria5
expand chile5
expand Norway5
expand Turkey5
expand Belgium4
expand Croatia4
expand Norway4
expand Poland4
expand Russia4
expand Serbia4
expand Slovenia4
expand Albania3
expand Ecuador3
expand egypt3
expand iran3
expand SAUDI ARABIA3
expand Cyprus2
expand Denmark2
expand dominican republic2
expand Jordan2
expand Seychelles2
expand Afghanistan1
expand Armenia1
expand Bulgaria1
expand Ceska republika1
expand China1
expand Costa Rica1
expand Czech Republic1
expand Denmark1
expand Egypt1
expand Hong Kong1
expand Indonesia1
expand Israel1
expand Lithuania1
expand MOROCCO1
expand Nepal1
expand PANAMA1
expand Qatar1
expand Roumania1
expand Scotland1
expand Uruguay1
expand US1
expand Venezuela1
expand Yemen1
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