We're so glad to have you join our PNH Research Study. Please watch this short video to learn more about how to use the Folia Health app to participate in this Research Study. You'll also find the transcript of the video at the end of this article.

​

INTRODUCTION

Hi, and welcome to the PNH Research Study! All study activities will be completed on the Folia Health app. This 5 minute video provides a few quick tips on using Folia.

HOME SCREEN

Okay- let's show you around.

On the bottom left of your screen, you’ll see a house. This is your home screen. To the right is the journal, where you can track your observations.

Your Research Checklist is also on the home screen. Here, you’ll be able to complete all your PNH study activities.

If you keep scrolling down, you’ll find Journal Trends. This may be blank if you haven’t tracked using Folia before, but don’t worry– as you participate in the study, your data will begin to populate here. In journal trends, you can see what symptoms are trending more severe, more mild, or the same over time.

Also on the home screen is a chat button. You can click this at any point during the study to send our study team a message.

RESEARCH CHECKLIST

You can think of the research checklist as your study side-kick, and a place where you can complete study activities. For this study, here is what you can expect. There will be a prompt for you to self-report your PNH clone size, upload documentation that shows your PNH diagnosis, and consent to the future use of your study data. Completing study activities earns you giftcards and helps to advance PNH research.

If you ever wonder what you need to do for the study, check the research checklist.

JOURNAL

Ok, let’s move on to your journal!

Your Journal is where you can track observations related to symptoms and treatments. Feel free to track any and all symptoms you’re experiencing and treatments you’re taking, even if they aren't related to PNH. Many Folia users track their condition-specific treatments, as well as vitamins, supplements, and other medications used to treat concurrent conditions.

To add a new symptom, click on the plus sign on the right hand side. Once you do that, you can “add a new observation”. In the Folia app, the word observation means medical event or symptom. You can either scroll through the pre populated list or use the search bar to create a new observation.

For each observation, you'll be able to track how you're feeling in detail. On the first day that you track a new symptom, you’ll be asked to set a baseline. After that, you can quickly track if you’re feeling better or worse than your baseline, and add additional details that are most helpful for you.

One of the requirements for this study is to track your symptoms at least once per week, but the more often you can track, the better!

FLARES

At Folia, we define a flare as a symptom that temporarily increases in intensity or frequency. We know how important it is to pay attention to these atypical events, as they may come on quickly and seemingly without reason. When one or more of your symptoms worsens, you can track a flare event and add additional details, including how the flare is impacting your day, how you are managing it, and any known triggers or causes. The flare event can be tracked in real-time, or you can always track after you’re feeling better.

The flare will be summarized on your home screen and visually on your calendar, with a flare icon appearing on days where flares were tracked.

TREATMENT TRACKING

We know that PNH patients may take different types of treatments. You can add a new treatment by clicking the plus sign to the right of the word treatment. Once you do that, you can scroll through a list of common treatments, or search and add the one you want. After you add your PNH treatments to your profile, you’ll be able to keep track of your treatment schedule and indicate whether you completed your treatments for the day.

If you take infusions, you can click “Add Tags”, where you’ll be prompted to answer a few optional questions. Your answers to these questions will help keep track of how infusions might impact your day, and how you feel.

TREATMENT SCHEDULING

You may be taking several treatments for PNH, and these treatments may have different schedules. If you add a treatment and the suggested schedule isn’t accurate for you, you can change it by going to Manage Treatments and clicking the edit button for the treatment you want to update. From there, you'll be able to adjust the time of day and the amount.

To delete a treatment, click the trash can at the top of the screen, and the minus sign to the left of the treatment that you want to delete.

WRAP UP

We hope this was a helpful introduction to the Folia Health app and the PNH Research Study. And remember, if you have any questions you can always reach out to the team using the chat feature in the app. Thanks for joining the study; we're so glad you're here.