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.

Combining patient-centered research and new technology to uncover hidden connections between inflammation and mental health

Patient-reported outcomes (PROs) are an increasingly popular and useful measure of the real-world benefit of a treatment and its impact on quality of life. Understanding the connections between autoimmune illness, inflammation and mental health is difficult without the patient’s perspective over time. How do you measure fatigue and pain intensity without asking the patient? How have the patient’s symptoms evolved over time? Has treatment had any effect on the patient’s quality of life?

As experts in their own condition and their own body, patients bring an understanding of their condition that is only possible through lived experience. PROs are especially useful in ill-defined conditions characterized by subjective symptoms.

Involving patients in medical research also improves patient recruitment, retention and adherence to clinical studies and trials, leading to more complete and higher quality data. Transparency and trust are positive side-effects.

Emerging trends in patient-centered research Unhide™

New technology is making it easier to capture the patient’s voice. Electronic clinical outcome assessments (eCOAs) and electronic PROs are a growing trend in clinical trials and studies. These tend to deliver much higher levels of data accuracy and integrity, compared to traditional paper-based diaries and questionnaires. Mobile health apps, wearable devices and patient portals allow patients to collect and share health data, track symptoms and communicate with researchers in real-time.

Not only does this give researchers access to a wealth of real-world patient data, but it also overcomes several obstacles that have hampered patient-centered research in the past. By eliminating the burden of traveling to a clinical trial site, digital tools and decentralized online platforms allowing patients to participate from any location, which means:

  • Patients from rural and diverse groups are not left out
  • Patients do not need to take time off work
  • Children can participate in longer-term trials, without missing school or undergoing invasive tests

The rise of wearables in patient-centered research

Patient-reported data has traditionally been eyed with suspicion by the clinical community, compared to the more “objective” clinician-observed data. However, with the explosion of online, digital and wearable technology over the last 10 years, the consensus is changing.

Wearables such as smart watches and rings (and some mobile apps) conveniently capture patient-reported outcomes beyond the clinical setting.

They can measure everything from an individual’s step count, heart rate and sleep duration to blood pressure, temperature and breathing rate. This data can be automatically pushed to data collection platforms, supporting research into multiple illnesses.

A review of 179 observational studies involving over 10 million participants found that wearable devices promote inclusion of under-represented populations, including individuals with rare diseases. The authors conclude that “big data extracted from wearables may potentially transform the understanding of population health dynamics and the ability to forecast trends.”

This is a cost-effective and natural way to obtain measurements throughout a patient’s normal day – especially important in chronic conditions. In addition to supporting data generation in cutting-edge research, wearables also help skeptical doctors believe the severity of symptoms such as insomnia and heart rate variability that are common in autoimmune illnesses such as Postural Tachycardia Syndrome (POTS), Long COVID, and chronic fatigue syndrome (CFS).

Scientifically Validated Assessments

The Unhide™ Platform uses patient and researcher tested data capture forms and aggregation protocols used by thousands of industry leaders for data submitted to FDA and other authorities to ensure that the data collected is research grade. This prevents the collection of misleading information and enhances our study’s credibility and value.

Research Grade Quality

We also follow regulatory grade data privacy and security: compliant with HIPAA, CFR, and all applicable global regulations to ensure participant data is safe. Researchers need approval to use our de-identified patient data.

We use regulatory grade data capture and cleaning. To ensure data quality, we use automated edit checks, follow data quality standard operating procedures, and use regular statistical analyses.

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

https://braininflammation.org/wp-content/uploads/2023/06/Unhide_whitepaper_V4.pdf