The main criteria for participation
The PROFA study is recruiting 200 patients aged 12 and over in three European countries, including France, suffering from Friedreich’s ataxia whose SARA (Scale for Assessment and Rating Ataxia) score is less than or equal to 30. They must also have access to and know how to use a smartphone or tablet.
The objective
This is an observational study that aims to identify the determinants of health, social life, and the effective use of healthcare resources, in order to better understand the individual, societal, and economic impact of Friedreich’s ataxia. It also assesses the acceptability, feasibility, and ease of use of a smartphone application that will collect health data in “real” life for analysis.
This type of study is essential to improve patient care, but also their daily life and that of those around them.
In practice
PROFA lasts six months. After an initial assessment conducted at one of the research centers, each patient transmits their data via the application, initially daily, then gradually less frequently, down to once a month.
France has an investigation center at the Brain Institute in Paris.
Where are we?
Recruitment is underway.
Contacts :
Alexandra Durr (Paris Brain Institute – ICM)
Alexandra.durr@icm-institute.org
Rania Hilab (Paris Brain Institute – ICM)