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 the BEAR-PWS Caregiver Study, we wanted to understand:
The full range of symptoms that people with PWS experience, and how that impacts caregiver well-being
How PWS symptoms and treatments impact quality of life
How PWS treatments affect caregiver quality of life
The goal for this study is to provide people caring for those with PWS, researchers, and clinicians with a complete view of the experience of PWS (for both patients and caregivers), 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 caregivers, and clinicians, because they’re the experts! We spoke with PWS caregivers and clinicians about symptoms, how they track them, flare-ups, treatments, and how our Folia Health app might be able to help. After these conversations, we write a report on patient priorities.
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 and caregivers? 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 PWS caregivers and clinicians.
Then the exciting part begins - collecting information, and watching as it is used by individuals and by researchers at the same time!