The unhide® Project: Digital Health Platform for Brain Inflammation Research
The unhide® Project is an observational study collecting health and lifestyle information from people with brain inflammation and related conditions, like Long COVID and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). You can participate if you are 2 years or older and live in the U.S., even if you are healthy. The study uses a secure app called MyDataHelps™ (branded as unhide®) to gather self-reported health data, biometrics, and symptom diaries. The goal is to build a large database over 10 years to help researchers better understand these conditions, find their causes, improve diagnosis, and develop new treatments. This study does not test any specific interventions or drugs.
- Study design
- This is an observational study planning to enroll 10,000 participants, including both those with and without brain inflammation conditions.
- What's involved
- You would provide self-reported health data, biometrics, and symptom diaries through the MyDataHelps™ app approximately every 4-12 weeks for up to 10 years.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed for up to 10 years, with assessments approximately every 4-12 weeks.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Megan L Fitzgerald, PhD · PRINCIPAL_INVESTIGATOR · Brain Inflammation Collaborative
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
What this trial measures
- Phenotypic data collectionFrom Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Collect, collate, clean, and analyze a large, well-characterized longitudinal dataset to investigate causes, disease progression, and potential treatments for complex chronic conditions, including infection-associated chronic diseases such as ME/CFS, Long COVID, PANS/PANDAS, autoimmune diseases, and neuroimmune disorders characterized at least in part by symptoms of neuroinflammation, including fatigue, brain fog, mood and behavioral changes, or other central or peripheral neurological symptoms.
- SubtypingFrom Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Use the patient reported outcomes to identify brain inflammation and other neuroinflammatory disease subtypes. * DePaul Symptom Questionnaire - Short Form (DSQ-SF): A survey measuring frequency and severity of symptoms common in ME/CFS and related conditions. Collected at baseline and quarterly thereafter. * COMPASS-31:A 31-item questionnaire survey autonomic symptoms including orthostatic intolerance, gastrointestinal, and vasomotor symptoms. Collected starting 1 month after baseline, every 6 months thereafter. * Beighton Questionnaire: A quick screening tool for generalized joint hypermobility, assessing flexibility. Collected starting 1 month after baseline, every 6 months thereafter.
- Passive data collectionFrom Baseline through up to 10 years, with assessments approximately every 4-12 weeks
Collect data from wearables that allow us to track step counts, heart rate variability and other indicators without the burden of participant data entry.