Dear CCHS families,
International patient organizations are launching a study on the quality of life of CCHS patients and their primary caregivers.
This very important study aims to draw attention to the medical need linked to the disease and the results will be the subject of an international publication.
Each family can complete 2 questionnaires:
1. A questionnaire intended for patients over 12 years old. Patients under 12 years of age should not respond.
2. A questionnaire intended for the primary caregiver: This is the person who helps, regularly and frequently, in a non-professional capacity, to support a patient on a daily basis. Only one caregiver can respond for each patient, regardless of the patient’s age.
Completing a questionnaire takes between 5 and 10 minutes.
To participate, click on the internet link below then on the flag corresponding to your language.
You are free to answer these questionnaires or not. The data collected is completely anonymous.
We are strongly counting on your participation and will send you the results as a priority.
Thanking you in advance,
Melinda Riccitelli, Ph.D.
President, CCHS Network