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

Brain Inflammation Collaborative

Status

Enrolling

Conditions

POTS - Postural Orthostatic Tachycardia Syndrome

Myalgic Encephalomyelitis (ME)

PTSD - Post Traumatic Stress Disorder

Celiac Disease

Sjogren's Syndrome

Celiac Disease in Children

Ehlers Danlos Syndrome

Endometriosis

Tourette's Syndrome

General Anxiety Disorder, Social Anxiety Disorder

Lupus

Obsessive Compulsive Disorder (OCD)

Avoidant / Restrictive Food Intake Disorder

Psoriatic Arthritis (PsA)

Neurological Diseases or Conditions

Ankylosing Spondylitis (AS)

Rheumatic Arthritis

Psychiatric Disorder

Multiple Sclerosis

Ulcerative Colitis and Crohn's Disease

Post-treatment Lyme Disease Syndrome

Anorexia Nervosa

Mast Cell Activation Syndrome

Autoimmune Encephalitis

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

Dysautonomia

Chronic Lyme Disease

Psoriasis

ARFID

Bulimia Nervosa

Juvenile Rheumatoid Arthritis (JRA)

Post-Acute COVID-19 Syndrome

Inflammatory Bowel Disease (IBD)

PANDAS

Crohn's Disease

Autoimmune Diseases

Narcolepsy

Traumatic Brain Injury

Myasthenia Gravis in Children

Fibromyalgia (FM)

Long COVID

Migraines

Myasthenia Gravis, Generalized

ME/CFS

Study type

Observational

Funder types

Other

Identifiers

NCT04806620

Details and patient eligibility

About

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.

Full 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.

Enrollment

10,000 estimated patients

Sex

All

Ages

2+ years old

Volunteers

Accepts Healthy Volunteers

Inclusion and exclusion criteria

Participants may be either self-diagnosed, or diagnosed by a physician with the following conditions:

Infection-associated chronic conditions such as Long COVID, chronic Lyme, myalgic encephalomyelitis (ME/CFS), and post-acute neuropsychiatric syndrome (PANS/PANDAS).
Neuroimmune, developmental, autonomic, and neurological conditions like migraines, dysautonomia, POTS, multiple sclerosis, and autism spectrum disorder.
Autoimmune diseases such as Lupus, Sjogren's Disease, rheumatoid arthritis, myasthenia gravis, ankylosing spondylitis, and related autoimmune conditions.

Inflammatory gastrointestinal conditions such as Crohn's Disease, Celiac Disease, and ulcerative colitis.

Behavioral and mood disorders such as anxiety, depression, bipolar disorder, PTSD, eating disorders, OCD, and other related conditions.
"Healthy" people (without brain inflammation), including unaffected individuals, unaffected individuals in the same household, and unaffected individuals who are married to relatives and family members.
Have consistent internet access and a cell phone, tablet, or PC since this is an online or app-based platform that requires entering data and completing surveys.
Currently live in the United States
Be able to participate in English (stay tuned for updates about the Spanish language version)
Be willing to share symptom and health data through the platform