A Conversation about the unhide® Platform
I’m excited to share a recent conversation with Breanne Failor, Director of Strategic Partnerships at the Brain Inflammation Collaborative (BIC). Breanne talks about how the unhide® platform is changing the landscape for PANS/PANDAS research and patient care. – Gabriella True, ASPIRE President.
Gabriella: Who is the Brain Inflammation Collaborative (BIC)?
Breanne: The Brain Inflammation Collaborative is a non-profit organization dedicated to bridging the gap between patients, researchers, and clinicians. Our mission is to combat the misconception that neuroinflammatory conditions—such as PANS, PANDAS, ME/CFS, POTS, and Long COVID—are purely psychiatric. We work to prove the connection between the immune system and the brain, striving for evidence-based diagnosis and treatment for “invisible” brain-based and inflammation driven illnesses.
Gabriella: What is the unhide® platform?
Breanne: unhide® is our unified digital health platform. Think of it as a bridge between your daily life at home and the researcher’s lab. It’s an app-based tool (powered by MyDataHelps™) that allows parents and patients to track symptoms, life events, and treatments in real-time. This platform was developed in collaboration with Solve M.E., and was previously known as “SolveTogether”.
As a parent of a child diagnosed with PANS I know how hard it can be to track all of the symptoms that your child may present with, especially when they sometimes change from flare to flare. I was looking for something to better validate my son’s experience and symptoms for his providers and for my own records. When you add in all the treatments, from medications to supplements, tracking everything can be overwhelming. unhide® has made the day to day management of documenting my son’s symptoms much easier and it allows me to use that data in appointments to help his providers better understand what we experience between visits.
But it’s more than just a tracker. It’s a research engine. By “unhiding” the lived experiences of thousands of families, we create a massive, de-identified database that researchers use to identify patterns, triggers, and treatment efficacy that would be impossible to see in a single doctor’s visit. It also allows patients to easily participate in research studies directly within the platform.
Gabriella: How much does it cost to participate?
Breanne: It is—and will always be—available at no cost for patients and families. We believe that your data is your data, and you should never have to pay to contribute to research efforts or to access your own health trends. The data will also never be sold to third parties. We feel very strongly about this and it’s one of the reasons I personally feel comfortable using this research platform for my child.
Gabriella: As a parent to a child with PANS/PANDAS, what is the “immediate win” for me if I sign up today?
Breanne: We know that keeping track of all your child’s symptoms and medications is extremely challenging while caring for a sick child. Then, once you finally get in front of a doctor after a six-month wait, it’s hard to remember exactly when a flare started or if a specific supplement helped. I remember sitting in many appointments trying to qualify how many hours the symptoms would go on each day and having a hard time remembering the exact data. Additionally, having to repeat everything to so many different doctors and specialists can be exhausting. unhide® helps parents and caregivers create reports that they can share with all of the providers so everyone has the same information.
unhide® offers parents these tools at no cost, and you can decide exactly what to use and what not to use based on your needs:
- Symptom and Intervention Reports: You can generate PDF reports of your child’s symptom trends to give to your doctor. It moves the conversation from “I think he’s worse” to “Here is the data showing the 30% increase in OCD symptoms since the last strep exposure.”
- Wearable Integration: Link a smartwatch or Oura ring to automatically track sleep disruptions and heart rate automatically (only available to users age 13 and older).
- Pacing & Alerts: For children dealing with extreme fatigue or Post-Exertional Malaise (PEM), the platform can send notifications to help you manage your child’s energy levels.
- EHR Connection: You can even link your Electronic Health Records so your clinical data lives alongside your daily symptom tracking.
Gabriella: PANS/PANDAS parents are spread thin. Is this a huge time commitment?
Breanne: Not at all. We designed this for the “busy parent.” Logging symptoms takes just a few minutes a day. You choose what you want to track. If you only have time to log the “Big Three” symptoms for your child, that’s okay. Every data point helps. You can access it via the app on your phone while waiting in the school pickup line or via a web browser on your computer.
Gabriella: Who will have access to my child’s data?
Breanne: Security is our top priority. All data is stored in a secure, HIPAA-compliant database managed by CareEvolution. When researchers use the data, it is de-identified, meaning anything that could possibly reveal your personal identity is removed. We never sell your data or share your identity with outside researchers. Only vetted collaborators see de-identified data sets, and internal access to identifiable information is strictly limited to a small, HIPAA-trained team for study administration only. You are in control; you can leave the platform at any time and have your data removed from the database.
Gabriella: Who is eligible to join the unhide® research community?
Breanne: We need a wide range of participants to make the data statistically powerful. To join, you need to:
- Live in the United States (including Puerto Rico and U.S. Territories).
- Be age 2 or older (parents/caregiver sign up for children under 18).
- Be living with a chronic illness OR be a healthy control (siblings and parents who are healthy are encouraged to join so we have a baseline for comparison!).
- Be able to participate in English or Spanish.
Gabriella: How do I get started?
Breanne: It’s simple. You can sign up directly through your browser at unhidenow.org. You can start logging immediately to ensure that data is captured for your next doctor’s visit and for future research. If you’d like to use the app once you sign up you can download MyDataHelps app on Apple or Android and sign into your account.
Once you sign up, you can customize your experience:
Step 1: You Decide What to Track You are the expert on your child. Choose exactly which symptoms and interventions you want to monitor. You can edit this list at any time as your child’s needs shift
Step 2: Quick & Easy Daily Logging We know you’re spread thin. Logging takes seconds—simply tap your selected symptoms, give the day an “overall rating” with a smiley face, and add time-stamped notes for those important nuances.
Step 3: See the Patterns in Real Time Instantly view your data through calendars and trend graphs. See at a glance how treatments are impacting symptoms and identify triggers you might have otherwise missed.
Step 4: Generate Professional Reports Prepare for your next appointment in one click. Export a comprehensive PDF report that summarizes symptoms, severity, and treatments to hand directly to your specialist.
Gabriella: Is there anything else you want parents and caregivers to know?
Breanne: Our team is made up of patients and caregivers—we get what you are going through. Our goal is to create a tool that makes your job a little easier while contributing to the research desperately needed to make things better for you and your children. The only way we can truly make a difference is by raising the voice of those living with these conditions and letting the data speak for itself. You’ve lived this for so long; now you have a tool that can finally quantify it.
Gabriella True
