Online survey into quality of life for patients and carers
We have been recently contacted by Michel LAMURE and Mondher TOUMI, professors at the “Decision Sciences and Health Policy” department at the French University Lyon 1 to participate to an international survey with the other associations in Europe and in the USA.
The survey is about HD burden and quality of life of patients and caregivers. This is an ambitious and very important project in our understanding of the burden of HD on sufferers and their families. This is the first study which measures specifically and factually the heavy burden imposed by this disease. Health Policy and the media are very sensitive to figures and studies, this survey will raise awareness of HD.
If you would like to participate, you will find two questionnaires available for download from this website http://global-hd-survey.com or ask for paper copy at this e-mail [email protected]
We ask adult people diagnosed with HD to respond to the patient questionnaire and to ask their main caregiver to answer to the caregiver questionnaire. More information is available in the website. Thank you for your participation.
We have been recently contacted by Michel LAMURE and Mondher TOUMI, professors at the “Decision Sciences and Health Policy” department at the French University Lyon 1 to participate to an international survey with the other associations in Europe and in the USA.
The survey is about HD burden and quality of life of patients and caregivers. This is an ambitious and very important project in our understanding of the burden of HD on sufferers and their families. This is the first study which measures specifically and factually the heavy burden imposed by this disease. Health Policy and the media are very sensitive to figures and studies, this survey will raise awareness of HD.
If you would like to participate, you will find two questionnaires available for download from this website http://global-hd-survey.com or ask for paper copy at this e-mail [email protected]
We ask adult people diagnosed with HD to respond to the patient questionnaire and to ask their main caregiver to answer to the caregiver questionnaire. More information is available in the website. Thank you for your participation.