NCT04806620

Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research

Unhide® Project Also Known as The Unhide® Solve Together Unified Platform

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 10,000 (estimated)
• Sponsor: Brain Inflammation Collaborative · Academic / Other
• Sex: All
• Age: 2 Years
• Healthy volunteers: Accepted

Summary

The unhide® Project is a non-interventional, longitudinal research study designed to establish a secure data repository of demographic, health, and lifestyle information from individuals with brain inflammation and related neuroinflammatory conditions. Participants in the United States aged 2 years and older will provide self-reported health data, biometrics, and symptom diaries through the MyDataHelps™ app (branded as unhide® for this study). The goal is to create comprehensive longitudinal profiles to facilitate research into disease subtypes, causes, diagnostics, and potential treatments, as well as to identify potential participants for future optional studies. "Healthy" individuals without brain inflammation are also eligible to participate. The digital health research platform used in this study was originally developed and designed by Solve M.E and was called SolveTogether. The Brain Inflammation Collaborative (BIC) expanded upon Solve M.E.'s work to include related diagnoses, pediatric participants, enhance symptom tracking, and more. BIC and Solve M.E. combined Solve Together and unhide®, to create The unhide® Solve Together Unified Platform in 2025.

Detailed description

The unhide® Project is sponsored by the Brain Inflammation Collaborative (BIC), a nonprofit organization dedicated to advancing understanding, diagnosis, and treatment of neuroinflammatory illness. This study will create a secure, long-term repository of demographic, health, lifestyle, biometric, and symptom data from individuals in the United States with brain inflammation and related conditions, as well as unaffected individuals. Data will be collected remotely through MyDataHelps™ by Care Evolution (rebranded as unhide®), a secure mobile and web-based platform enabling eConsent, survey completion, health record linkage, and optional symptom/activity tracking. Eligible participants are U.S. residents aged 2 years and older, including both self-identified and physician-diagnosed individuals with infection-associated, autoimmune, neuroimmune, inflammatory gastrointestinal, and behavioral/mood disorders, as well as "healthy" individuals. There are minimal exclusion criteria: individuals living outside the U.S., wards of the state, and those with decisional impairment are ineligible. Pregnant women may participate, and prior or concurrent participation in other research studies is permitted. The study will follow participants for 10 or more years, collecting self-reported health information, comorbidities, medical history, biometrics (e.g., heart rate, sleep, activity), and symptom data to generate comprehensive longitudinal health profiles. This data resource aims to accelerate translational research, identify disease subtypes, uncover causes and risk factors, support the development of diagnostic tests and treatments, and improve outcomes for individuals affected by neuroinflammation.

Conditions

• Post-Acute COVID-19 Syndrome
• ME/CFS
• Rheumatic Arthritis
• Juvenile Rheumatoid Arthritis (JRA)
• Psoriatic Arthritis (PsA)
• Ankylosing Spondylitis (AS)
• Autoimmune Encephalitis
• Celiac Disease
• Celiac Disease in Children
• Chronic Lyme Disease
• Post-treatment Lyme Disease Syndrome
• Crohn's Disease
• Dysautonomia
• Anorexia Nervosa
• Bulimia Nervosa
• ARFID
• Avoidant / Restrictive Food Intake Disorder
• Ehlers Danlos Syndrome
• Endometriosis
• Fibromyalgia (FM)
• Long COVID
• Lupus
• Migraines
• Mast Cell Activation Syndrome
• Multiple Sclerosis
• Myalgic Encephalomyelitis (ME)
• Myasthenia Gravis, Generalized
• Myasthenia Gravis in Children
• Narcolepsy
• Obsessive Compulsive Disorder (OCD)
• PANDAS
• Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)
• POTS - Postural Orthostatic Tachycardia Syndrome
• General Anxiety Disorder, Social Anxiety Disorder
• PTSD - Post Traumatic Stress Disorder
• Psoriasis
• Traumatic Brain Injury
• Tourette's Syndrome
• Inflammatory Bowel Disease (IBD)
• Autoimmune Diseases
• Neurological Diseases or Conditions
• Psychiatric Disorder
• Sjogren's Syndrome
• Ulcerative Colitis and Crohn's Disease

Timeline

• Start date: 2023-07-05
• Primary completion: 2030-06-30
• Completion: 2030-12-31
• First posted: 2021-03-19
• Last updated: 2026-01-22

Locations

1 site across 1 country: United States