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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: 2681




Geographic Information on Individuals in Registry

 CountryPatients 
expand United States1523
expand Brazil312
expand Canada113
expand United Kingdom81
expand Australia72
expand Spain66
expand India63
expand Italy43
expand Ireland42
expand Sweden27
expand France26
expand Greece23
expand Mexico20
expand South Africa20
expand Argentina17
expand Colombia14
expand Germany14
expand New Zealand14
expand Pakistan13
expand Switzerland12
expand Turkey11
expand Iran10
expand Austria7
expand Lebanon7
expand Poland7
expand Portugal7
expand Romania7
expand Netherlands6
expand Serbia6
expand Chile5
expand Croatia5
expand Norway5
expand Slovenia5
expand Albania4
expand Belgium4
expand Israel4
expand Norway4
expand Russia4
expand SAUDI ARABIA4
expand Bahrain3
expand Bulgaria3
expand Cyprus3
expand Denmark3
expand Ecuador3
expand egypt3
expand dominican republic2
expand Egypt2
expand Jordan2
expand Morocco2
expand Qatar2
expand Seychelles2
expand Venezuela2
expand Afghanistan1
expand Armenia1
expand Bosnia Herzegowina1
expand Ceska republika1
expand China1
expand Costa Rica1
expand Czech Republic1
expand Denmark1
expand Hong Kong1
expand Indonesia1
expand Israel1
expand Kosova1
expand Lithuania1
expand MOROCCO1
expand Nepal1
expand PANAMA1
expand Paraguay1
expand Roumania1
expand Scotland1
expand Syria1
expand Uruguay1
expand Yemen1