Bridging Gaps in Research

Through a coordinated research effort involving patients, clinicians and researchers, the Brain Inflammation Collaborative strives to uncover connections between brain inflammation and mental and physical health and make advances in the diagnosis, treatment and prevention of neuroinflammatory illness.

Uncover hidden connections between inflammation and mental health with patient-reported outcomes that leverage wearables, and validated assessments on the Unhide™ Platform for groundbreaking research insights.

The Unhide Project is an ongoing online clinical study that assembles patient-donated data to help clinicians and researchers accelerate breakthroughs surrounding brain inflammation and mental health.

Join the Movement

The relationship between brain inflammation and mental health is vastly understudied and misunderstood. The Brain Inflammation Collaborative is leading the charge to change that. Discover all the different ways you can support our mission to find long-overdue answers and solutions for patients.

Symptoms associated with brain inflammation are as varied as the brain’s functional capacity and can affect everything from emotion to movement. Because of the diversity of symptoms, brain inflammation can be extremely difficult to diagnose and, at times, the use of imaging and lab tests may reveal the underlying cause of symptoms.

Symptoms of brain inflammation

Symptoms associated with chronic brain inflammation can be characterized as neurological (arising from brain, spinal cord, nerves, or autonomic nervous system) or psychological (mental, emotional, and behavioral). It is important to note that as scientific understanding grows, psychological disorders are increasingly found to be neurologic in origin.  While initial symptoms may be as nonspecific as fatigue and headache, patients with post-infectious brain inflammation typically develop multiple neuropsychiatric symptoms within 2-3 weeks of infection or reinfection. (Mayo Clinic) and The Encephalitis Society (global expert consortia). The rapid onset of the below listed wide ranging symptoms is often a clue.

Neurological symptoms: 

  • light-headedness
  • decreased consciousness
  • seizures
  • movement disorders
  • motor and vocal tics
  • cognitive issues (including memory problems and poor concentration)
  • speech problems
  • chronic fatigue
  • sleep disturbances
  • autonomic instability (variation in blood pressure and heart rate)
  • trouble breathing
  • joint or nerve pain
  • brain fog

Psychiatric symptoms: 

  • disturbed behavior
  • OCD
  • depression
  • restrictive eating
  • anxiety
  • paranoia
  • intrusive thoughts
  • delusions and hallucinations
  • agitation or aggression
  • mood dysregulation
  • personality changes

Diagnosing brain inflammation

Diagnosing brain inflammation begins with a careful review of a patient’s medical history and a detailed physical exam. Because the symptoms above can occur in  several different conditions, with or without brain inflammation, imaging and lab tests (taking samples of blood or cerebrospinal fluid) can help with possible diagnoses.

Diagnosing brain inflammation is traditionally difficult due to lack of sensitivity in blood testing, brain imaging, and cerebral spinal diagnostics.
– Mayo Clinic

Diagnostic Tests 

Extensive testing is often required to diagnose the underlying cause of brain inflammation: 

  • Blood samples – are used to test for markers of inflammation and, importantly, to identify harmful antibodies; sometimes  proinflammatory cytokines are measured or immune deficiencies are detected.
  • Imaging (PET, CT, MRI) – is often used to rule out a diagnosis of stroke, brain tumor, or aneurysm, as well as to detect and understand the extent of inflammation (e.g., basal ganglia injury)

  • Electroencephalograms (EEGs) – used to measure brain activity, EEGs are often used to rule out diagnosis of seizures

  • Lumbar puncture – sampling cerebrospinal fluid (CSF), can help rule out infection and detect inflammatory cells, excess protein,  and antibodies against neuronal tissues.

Need for research: the Unhide™ Project

Our vision is for brain inflammation disorders to be easily diagnosed by medical professionals and to find accessible therapies. 

To support research in this area we developed the Unhide™ Project, a longitudinal and historical research registry and bio repository platform to study the potential immunological mechanisms driving chronic brain inflammation in order to find new therapeutic targets.

Research is critical to evolve current therapies and develop new treatment targets

The Unhide™ Project was established to collect lab samples from patients with diseases characterized by brain inflammation in order to compare and understand common biomarkers.

You can mail a check (payable to Brain Inflammation Collaborative, Inc.) with your donation any time to the following address:

Brain Inflammation Collaborative, Inc.
925 Genesee St #180440
Delafield, WI 53018