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Massive study aims to unlock secrets of brain inflammation diseases

NCT ID NCT04806620

Knowledge-focused Sponsor: Brain Inflammation Collaborative Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This research study collects health information from 10,000 people with brain inflammation conditions like Long COVID, ME/CFS, and autoimmune diseases. Participants use a smartphone app to share symptoms, health history, and wearable data. The goal is to find disease subtypes and speed up research into causes and treatments.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 10,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jul 2023

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

This is a study of individuals with brain inflammation and healthy controls.

Ages

2 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

ankylosing spondylitis anorexia nervosa anxiety disorder autoimmune disease autoimmune disorder of the nervous system autoimmune encephalitis autonomic nervous system disorder avoidant/restrictive food intake disorder bipolar disorder Brain Injuries, Traumatic bulimia nervosa celiac disease chronic childhood arthritis combat disorder Crohn disease Depression dysautonomia Ehlers-Danlos syndrome encephalitis endometriosis Fatigue fibromyalgia Generalized Anxiety Disorder inflammatory bowel disease juvenile idiopathic arthritis long COVID-19 lupus erythematosus major depressive disorder mast cell activation syndrome Mental Fatigue migraine disorder mood disorder multiple sclerosis myalgic encephalomeyelitis/chronic fatigue syndrome myasthenia gravis narcolepsy nervous system disorder Neuroinflammatory Diseases obsessive-compulsive disorder PANDAS pediatric acute-onset neuropsychiatric syndrome Post-Lyme Disease Syndrome post-traumatic stress disorder post-treatment Lyme disease syndrome postural orthostatic tachycardia syndrome psoriasis psoriatic arthritis psychiatric disorder Psychological Well-Being rheumatic fever rheumatoid arthritis Sjogren syndrome social phobia Tourette syndrome traumatic brain injury ulcerative colitis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Ankylosing spondylitis (AS) Anorexia nervosa ARFID Autoimmune diseases Autoimmune encephalitis Avoidant restrictive food intake disorder Bipolar disorder (BPD) Bulimia nervosa Celiac disease Celiac disease in children Chronic Lyme disease Crohn's disease Dysautonomia Ehlers-Danlos syndrome Endometriosis Fibromyalgia (FM) General anxiety disorder, social anxiety disorder Inflammatory bowel disease (IBD) Juvenile rheumatoid arthritis (JRA) Long COVID Lupus Major depression Mast cell activation syndrome Me/CFS Migraines Multiple sclerosis Myalgic encephalomyelitis (ME) Myasthenia gravis in children Myasthenia gravis, generalized Narcolepsy Neurological diseases or conditions Obsessive compulsive disorder (OCD) PANDAS Pediatric acute-onset neuropsychiatric syndrome (PANS) Post-acute COVID-19 syndrome Post-treatment Lyme disease syndrome Pots - postural orthostatic tachycardia syndrome Psoriasis Psoriatic arthritis (PSA) Psychiatric disorder PTSD - post traumatic stress disorder Rheumatic arthritis Sjogren'S syndrome Tourette's syndrome Traumatic brain injury Ulcerative colitis and Crohn'S disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Brain Inflammation Collaborative

    RECRUITING

    Delafield, Wisconsin, 53018, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.