Homocystinuria Patient & Caregiver Survey: Experiences of Diagnosis and Beyond

We are seeking input to an online patient and caregiver survey to enable us to better determine the greatest unmet needs of the patient community and gauge responses from patients living with HCU and their families on how we can improve this experience for the future. We want to know how those affected by Homocystinuria and their families feel about the quality of care and treatment, access to information, satisfaction with treatment and quality of life outcomes. The survey comprises of 53 questions and is mostly multiple choice, so should take around 10 minutes to complete.

The deadline for completion of the survey is Sunday 14 February, 2016.

The link for the survey is https://www.surveymonkey.com/r/H5Q6YL6

For Patient and Caregiver Survey in Portuguese click here

The responses will provide valuable feedback that will be used to develop our initiatives and focus our efforts where they are most needed. They will also allow us to establish a baseline to measure whether we are achieving our goals. We would be delighted if you would take part in the anonymous survey. If you are in contact with other HCU individuals or families of affected individuals we would appreciate your further help by forwarding to them.

Should you have any queries do not hesitate to contact us.