Welcome to the Homocystinuria Patient and Caregiver Survey

Who is HCU Network Australia?

HCU Network Australia is a Health Promotion Charity established in 2014 for individuals affected by homocystinuria and their families.  Our aim is to connect and support HCU individuals and their families, provide information and education to persons impacted by the disorder and encourage and support medical expertise in the area.

You should answer this survey if you, or a family member, have been diagnosed with one of these disorders.  If you are responding as a parent/caregiver and have MORE THAN ONE child with homocystinuria, please submit a survey response for EACH CHILD.

There is currently limited evidence showing the considerable length of time taken to reach a diagnosis of homocystinuria and levels of patient satisfaction regarding access to information, treatment options and medical care.  This survey is important to highlight the current situation and has been prepared in consultation with a Key Opinion Leader (KOL) in Europe together with input from HCU Network America, to ensure the information gathered can be used globally to help support improved care for all homocystinuria patients.

We ask no matter what your experience, good or bad, you complete the survey.  

The survey will be anonymous and your identity will not be known.  You can refrain from answering any question that you feel could lead to your identity.  

The aggregate results of the survey will be published.

If you have any questions please contact: Tara Morrison (Director, HCU Network Australia) at tara@hcunetworkaustralia.org.au

The deadline for completion of this survey is Sunday 1st February 2019.

The survey will take approximately 15 minutes to complete.