Hi Reader,
Managing conditions like PANS/PANDAS can feel like trying to solve a puzzle with missing pieces. PANDAS Network is excited to share a new resource from the Brain Inflammation Collaborative (BIC) designed to help you manage daily care while supporting future research.
The unhide® Platform is a no-cost, digital tool that helps you manage tracking your child (or your) symptoms, medications and life events while acting as a bridge between your home and the researcher's lab. Our goal is to make your life easier in managing PANS/PANDAS while turning your lived experience into data that can change the landscape of medical research. This platform was developed in collaboration with SolveME, and was previously known as “SolveTogether”.
Why join the unhide® community?
● Data-Driven Doctor Visits: You can generate PDF reports of your or 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 symptoms since the last visit." It also allows you to better track and report new interventions prescribed by your care team.
● Smart Integration: We have the option to link your wearable devices for patients 13 and older (like an Oura ring or Apple Watch) and Electronic Health Records to see all your data in one secure place.
● Pacing Tools: Use specialized alerts to manage energy levels and help prevent the "crash" often associated with extreme fatigue.
● Secure & Private: Your data is stored in a HIPAA-compliant database. Outside researchers only see de-identified information. Your data is yours; it will never be sold, and you can leave the platform and remove your data at any time.
● Drive Discovery: By sharing de-identified data, you help a global "research engine" identify patterns and treatments that are impossible to see in a single clinic visit.
Who can participate?
To build a powerful dataset, we need a wide range of participants. You are eligible if you:
- Live in the United States (including Puerto Rico and U.S. Territories)
- Are age 2 or older (parents/caregivers sign up for children under 18).
- Are living with a chronic illness OR are a healthy control. (Healthy siblings and parents are highly encouraged to join to provide a vital baseline for comparison!)
- Can participate in English or Spanish.
How to get started:
It only takes a few minutes to set up.
- Sign Up: Visit unhidenow.org to create your account.
- Download: Get the MyDataHelps app (Apple or Android) to start logging. The app on your phone will be called MyDataHelps.
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.
How do I know my data is safe?
Security is our top priority. All data is stored in a secure, HIPAA-compliant database managed by CareEvolution. To protect your privacy, external researchers only receive de-identified data stripped of personal details. While a small internal team manages the platform, no outside researchers can ever access your or your child’s identity. You are in control; you can leave the platform at any time and have your data removed from the database.
We understand that your time is valuable and that is why we wanted to share this new tool with you. We are hopeful that this will make your journey a little easier. Together, we can "unhide" these conditions and let the data speak for itself.
If you have any questions please email help@braininflammationcollaborative.org
Diana Pohlman
Executive Director
PANDAS Network