The impact of HoFH – Survey

Knowledge about how HoFH impacts people’s lives is scarce. There have been limited studies conducted to understand how this ultra-rare condition affects diagnosed individuals and their family members, who often act as caregivers. Having identified this knowledge gap, FH Europe was pleased to be involved in the development of a survey supporting a research project designed to better understand the challenges faced by the HoFH community. Our international HoFH Patient Ambassadors have been actively contributing to the process of the research survey design. Now we are pleased to share it and to invite you to take part in it.

But first we wish to share more information to help anyone interested make an informed decision about their participation.

Who is conducting the survey?

The survey is being conducted by a scientific research consultancy called Putnam PHMR, which was commissioned by a pharmaceutical company, which we collaborate with.

Who can participate?

The survey will be open to anyone, who is:

• diagnosed with HoFH, which was confirmed by either a genetic test, or a blood test, family medical history or physical symptoms, and is older than 12 years,
• a caregiver to someone who lives with HoFH.

What will happen to the collected information?

All results from the survey will be anonymized and no personal data will be shared. This means that the research team and the company funding the survey will not see any personal details. Information given during the survey cannot be used in any way to identify an individual.

What happens next?

The results of this survey will inform regulators and health policy makers, on what it means to live with HoFH, or to care for someone living with HoFH. The findings will also be published and be made available through Open Access for the benefit of people with HoFH and anyone with an interest in the area.

What is the goal of this survey?

The goal of this survey is to provide critical information about what it means to live with HoFH to help inform regulators and policy makers, who make decisions affecting the treatment and care of people living with HoFH. It is also intended to help identify gaps in support to promote new initiatives

Deadline to respond is May 17th.

For additional questions please contact Jill, our Rare Diseases Project Manager.