Have you ever wondered how a research study is designed? Let me tell you how we do it at Folia! It all starts with a question, or maybe a few, and a goal - what will the information be used to achieve? For this PNH study, we wanted to understand:

The goal for this study is to provide people living with PNH, researchers, and clinicians with a complete view of the experience of PNH, in order to improve the comprehensiveness of care and assist in better measurement of the effectiveness of new treatments.

We took those questions and began designing a study to answer them.

At Folia, we always start by talking to people living with the condition, their family members, and clinicians, because they’re the experts! We spoke with PNH patients and clinicians about symptoms, how they track them, flare-ups, treatments (including infusions and infusion schedules), and how our Folia Health app might be able to help. After these conversations, we write a report on patient priorities (I’m planning to send a summary of this to you in a few weeks if you’re interested in reading it).

Next, we use this feedback to create a custom, disease-specific program in our app. This process involves a lot of back and forth between our team and these experts to

ensure we get it right. All the while, we’re constantly asking ourselves: Will this be helpful for patients? Will they get value out of using Folia and participating in this research?

Once we get to a point where everyone agrees that the content answers our research questions and is user-friendly and valuable to participants, we move into the next phase. Our engineering team helps us build out the vision of PNH patients and clinicians.

Then the exciting part begins - collecting information, and watching as it is used by individuals in the clinic and by researchers at the same time!

Questions about how we design research at Folia? Send me an email- it’s one of my favorite parts of my job :)

Best,

Sam