Dear Madam or Sir,
You are invited to take part in a research study entitled:
“Pain and Its Impact in Friedreich’s Ataxia.”
Pain is a frequently reported symptom in Friedreich’s ataxia. However, to date, the underlying mechanisms of pain and its impact on the daily lives of affected individuals have not been specifically studied.
Study objective
The aim of this study is to better characterize pain associated with Friedreich’s ataxia by describing its clinical features and evaluating its impact on quality of life.
The results of this research will contribute to improved recognition of pain in Friedreich’s ataxia and to the development of more appropriate management strategies.
Study procedures
This study is based on an online questionnaire intended for individuals diagnosed with Friedreich’s ataxia.
The questionnaire includes 28 questions and requires approximately 20 minutes to complete. It may be completed in several sessions and, if necessary, with the assistance of a relative or caregiver.
The questionnaire explores:
-
personal and medical characteristics (age, sex, diagnosis, physical and psychological symptoms, functional limitations),
-
the presence, nature, and intensity of pain,
-
the impact of pain on daily activities, sleep, mood, and social relationships.
Benefits and risks
Participation in this study is entirely voluntary. No risks are associated with participation.
You may choose not to participate or may withdraw from the study at any time, without providing a reason and without any consequences for your medical care.
Processing of personal data
Your responses will be processed electronically in strict accordance with confidentiality requirements. All data will be coded, without any identifying information (name or contact details), and will be used exclusively for the purposes of this research.
Data will be retained until completion of the final study report and subsequently archived in compliance with applicable legal and regulatory requirements.
In accordance with the General Data Protection Regulation (GDPR), you have the right to:
-
access your data and request rectification, erasure, or data portability,
-
object to the processing of your data or request restriction of processing.
These rights may be exercised by contacting the Data Protection Officer at:
contact.dpo@drawyourfight.org
If you encounter any difficulties, you may also contact the French Data Protection Authority (CNIL) at:
3 Place de Fontenoy, 75334 Paris Cedex 07, France, or via www.cnil.fr.
Regulatory framework
This study is registered under the reference number 2025-A00780-49.
Contact information
For any questions or additional information regarding this study, you may contact:
Camille Racca, Co-Investigator
📧 camille.racca@drawyourfight.org
We sincerely thank you for your trust and your participation.