Non-therapeutic Study Non-therapeutic Study: The purpose of a non-therapeutic study is to increase the understanding of a disease or condition through observation, data collection, or other methods. A non-therapeutic study does not provide treatment or intervention for participants. This type of research contributes to general knowledge that may benefit others in the future by improving treatment or developing new therapies. If you are interested in learning more about your possible participation in this study, please complete the form. Your information will be forwarded directly to the study sponsor.
This study aims to capture the full spectrum of symptoms, treatment utilization, and overall Health-Related Quality of Life (HRQoL) experienced by PNH patients. As a participant, you will track what you're noticing about your health in the Folia Health app once per week for 6 months.
You will use the Folia Health mobile app to enroll, consent, and complete all study activities. You'll be asked to track routine treatment, symptoms, changes in treatment plans, and HRQoL using the app. You'll also complete monthly survey check-ins, with the possibility of integrating electronic health record (EHR) and/or claims data.
There are no medical history or treatment restrictions for this study.
Patients enrolled in the study will be compensated for participating.
- Aged 18 or older
- US-based with a proficient understanding of and ability to read the English language
- Any patient with a diagnosis of PNH, regardless of current treatment use.
Study participants who do not fit all inclusion criteria listed above are unable to participate in this study.