Invitation to enroll in European Patient Registry for Friedreich’s Ataxia
The National Ataxia Centre at Tallaght University Hospital would like you to know that their research project entitled the European Friedreich’s Ataxia Consortium for Transitional Studies (EFACTS) is currently recruiting people with Friedreich’s Ataxia (FA). It is a European, multi-centre, longitudinal, observational registry study of FRDA (see www.efacts.eu and https://clinicaltrials.gov)
This project was initially organized and funded by the Seventh Framework Program of the European Union in 2010 under Prof Massimo Pandolfo in Brussels. Currently, Prof Jorg Schult, Aachen University is our project leader.
We all share the same aspiration to identify a treatment that will change the course of FA. The aim of this project is to gather detailed information from people with FA over many years to inform us about the expected change in the absence of any disease modifying treatment. This hugely valuable information can then be used to evaluate what the effect of any potential future new treatment is on the condition when introduced as part of a trial.
Participation in EFACTS is not required to be eligible to participate in any future clinical treatment trials and participation will not prevent you from joining any future clinical trials.
The study involves an annual assessment which includes:
1) A review of medical history and medications you are currently taking or have recently taken
2) Measurement of weight, height (if possible), blood pressure, pulse and reviewing cardiac status.
3) A detailed neurological examination which includes assessing the tone, power and co-ordination of your arms and legs, eye movements
4) An assessment of your ability to carry of activities of daily living,
The data is entered anonymously into a secure database which has been approved by our Data Protection Officer. Ethical approval has been obtained from our local Research Ethics Committee. It would be particularly helpful if people in the early stages of the disease volunteered to participate.
We would encourage you to support this research. More details can be obtained from firstname.lastname@example.org /email@example.com or text 087 2653065 who give you more detailed information and arrange your participation in more detail
Tallaght University Hospital centre has become a recognised European centre for Ataxia in the European Reference Network for Rare Neurological diseases.
Dr. Mary Kearney is assistant researcher for Ataxia in both children and adults.