This is an at-home, app-based study collecting everyday health observations from people living with PNH. Your observations about your health—tracked in the Folia app—can help clinicians and researchers understand the range of treatments used and how those treatments might affect how you’re feeling.

Participation lasts for 12 months. Track your health observations at least once per week, and more frequently as you notice them. It takes a few minutes each day that you decide to track.

In addition, at the end of the month it will take about 10 minutes to complete a monthly survey.

You will receive gift cards in exchange for participating. Gift cards are sent monthly in return for completing key study activities, for a total of $310 if all activities are completed.

Remember, participation is voluntary, and you can leave at any time, for any reason.

-Sign up and register for a Folia Health account

-Agree that you’re eligible to participate (you’re 18+ years old, living in the US, and have been diagnosed with PNH)

-Review and sign a consent form to participate in the study

-Share a medical document showing that you’ve been diagnosed with PNH by a doctor

-Track your symptoms and treatment use at least once per week in the Folia app, for a period of 12 months

-At the end of each month, complete a short survey about your health

All data you put in the Folia app belongs to you, and only the researchers on the study team, the Study Sponsor, and the Institutional Review Board (IRB) overseeing the study may see the data you enter as part of the study.

Any data you continue to enter into the Folia app once the study is over will not be seen or used by the researchers.

This study is funded by Novartis Pharmaceuticals Corporation.