Caregivers - Quality of life assessment |
Welcome to the survey on the quality of life of CCHS patients and their primary caregivers
This survey aims to assess the quality of life of CCHS patients with and their primary caregivers.
The results of the study will be published in a scientific journal and will draw attention to the medical need related to the disease.
This study is conducted internationally by 9 countries: United States, United Kingdom, France, Germany, Spain, Portugal, Italy, Poland, Israel.
People who can answer the questionnaire
The people who can answer the questionnaire are the main caregivers of people with CCHS, regardless of the person's age. The main caregiver is the person who comes to the aid, on a regular and frequent basis, in a non-professional capacity, to perform all or part of the acts or activities of daily living of a person affected by CCHS.
You are free to answer these questionnaires or not. Failure to answer this questionnaire has no consequences.
By answering this questionnaire, you consent the processing your anonymous personal data, which does not allow you to be identified.
Data collected
The data collected is completely anonymous. No name, email address or other means of contact is requested before, during or after the completion of the questionnaire. Patient organizations will at no time have access to data from the questionnaires and will not be administrators of the survey.
At no time will patient organizations have access to the raw data from the questionnaires. It will thus be strictly impossible to make the link between a member or a patient and the answers to a questionnaire.
In accordance with the law, you can access the data concerning you, rectify it, request its deletion or exercise your right to limit the processing of your data. You can withdraw your consent to the processing of your data at any time. You can also oppose the processing of your data or exercise your right to the portability of your data.
To exercise these rights or for any questions about the processing of your data in this system, you can contact the person in charge of carrying out the study at the following address: julien.pelissou@gmail.com
If you believe, after contacting us, that your “IT and Freedom” rights are not respected, you can file a complaint with the legal authorities.
The results of the study will be published in a scientific journal and will draw attention to the medical need related to the disease.
This study is conducted internationally by 9 countries: United States, United Kingdom, France, Germany, Spain, Portugal, Italy, Poland, Israel.
People who can answer the questionnaire
The people who can answer the questionnaire are the main caregivers of people with CCHS, regardless of the person's age. The main caregiver is the person who comes to the aid, on a regular and frequent basis, in a non-professional capacity, to perform all or part of the acts or activities of daily living of a person affected by CCHS.
You are free to answer these questionnaires or not. Failure to answer this questionnaire has no consequences.
By answering this questionnaire, you consent the processing your anonymous personal data, which does not allow you to be identified.
Data collected
The data collected is completely anonymous. No name, email address or other means of contact is requested before, during or after the completion of the questionnaire. Patient organizations will at no time have access to data from the questionnaires and will not be administrators of the survey.
At no time will patient organizations have access to the raw data from the questionnaires. It will thus be strictly impossible to make the link between a member or a patient and the answers to a questionnaire.
In accordance with the law, you can access the data concerning you, rectify it, request its deletion or exercise your right to limit the processing of your data. You can withdraw your consent to the processing of your data at any time. You can also oppose the processing of your data or exercise your right to the portability of your data.
To exercise these rights or for any questions about the processing of your data in this system, you can contact the person in charge of carrying out the study at the following address: julien.pelissou@gmail.com
If you believe, after contacting us, that your “IT and Freedom” rights are not respected, you can file a complaint with the legal authorities.