What is a patient registry?
A patient registry is a collection of information about individuals who have a specific condition. The ARSACS International Registry is for individuals with Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS). The ARSACS International Patient Registry is sponsored by the Ataxia Charlevoix -Saguenay Foundation, a charitable organisation.
What are the benefits of joining the ARSACS registry ?
By joining the ARSACS International Patient Registry, you will be kept informed of any major developments and opportunities for clinical trials. Furthermore, you will contribute in building an international network with all the associated indirect positive impacts (i.e. greater awareness of the disorder, helping to get research funding and to stimulate interest from the pharmaceutical companies).
Can a participant be registered in more than one registry?
Yes. Participation in the registry is on a voluntary basis and a participant can be registered in more than one registry.
Is there a risk that personal information collected in the registry be disclosed?
The Ataxia Charlevoix- Saguenay Foundation is taking all the necessary steps to ensure that the patient personal information is secured.
Who has access to the information ?
Only the registry administrator of the Ataxia Charlevoix-Saguenay Foundation has access to the personal information of the participant. No researcher or doctor has access to the identity or personal information of a participant. All data are at aggregate level. No specific individual information will be disclosed.
How is my personal information going to be updated?
The participant would be able to update his information throughout the year by sending an email to: email@example.com. Furthermore, the registry administrator will send once a year an email to the participant to validate his specific information contained in the registry.
Can a participant withdraw from the registry ?
The registration is on a voluntary basis and a participant can withdraw at any time. The participant must inform the registry administrator of the Ataxia Charlevoix-Saguenay Foundation of its decision to withdraw from the registry by sending an email to : firstname.lastname@example.org
Who should the participant contact with questions or concerns?
The registry administrator of the Ataxia Charlevoix-Saguenay Foundation should be contacted for any questions or concerns regarding the registry by sending an email to : email@example.com