# What is the purpose of these surveys?

Edited 2 years ago

The purpose of these surveys is to gather information directly from patients about their experiences with a medical condition or treatment. By collecting this information, healthcare providers and researchers can gain a better understanding of how patients are impacted by different conditions and treatments, and can use this knowledge to improve patient care and outcomes.

# What will these surveys ask?

Surveys ask questions about your health conditions and how they impact your day-to-day life. You may be asked about your symptoms, physical and mental well-being, medical history, social factors, healthcare experiences, and more.

# **Why should I complete these surveys?**

Surveys capture your lived experience with a rare condition and amplify patient voices. The patient-centered data from surveys can help advance research by giving researchers insight into the real world experience of people living with a medical condition. As a bonus, some surveys offer compensation to participants.

# **How are my responses being shared?**

PicnicHealth's research team will have access to your survey data and may also share de-identified data with other researchers. It's important to note that any shared information will not include personally identifiable details, ensuring your anonymity.