Frequently Asked Questions (FAQs)

About The Platform

unhide® is a digital health platform that tracks patient health stories, symptoms, life events, and bio-samples to advance research on brain inflammation, chronic health conditions, and their connection to mental health. We aim to combat the misperception that people with brain inflammation and associated chronic medical conditions have mental health symptoms because of how they feel about their health. We strive to develop new, evidence-based diagnosis, treatment, and prevention strategies for neuroinflammatory illnesses that have a variety of underlying causes and symptoms. We work to increase awareness of the connections between the immune system, the brain, and mental health by connecting patients, researchers, and healthcare providers.

Available through the MyDataHelpsTM app on your smartphone and online, unhide® meets you where you are.

To enhance research and patient care, the Brain Inflammation Collaborative partnered with Solve M.E., a leading nonprofit organization focused on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), who built a patient-centered data platform called Solve Together, the largest database of its kind in the U.S. Our partnership combined the resources and data from both organizations. This collaboration allowed us to broaden access to the platform. It enables children and teenagers to participate in research, as well as individuals with related conditions such as PANS, Long COVID, chronic Lyme disease, and other related chronic illnesses.

The Brain Inflammation Collaborative now manages the combined Solve Together and unhide® platforms – simply referred to as unhide® as of March 2026. Our focus is on research and Solve M.E. will continue their critical work in the areas of education, patient support, and advocacy.

Read the April 29, 2025, press release here.

unhide® is powered by the Brain Inflammation Collaborative, a patient-centered research nonprofit organization dedicated to understanding the link between brain inflammation, chronic health conditions, mental health symptoms, and long-term health. The Brain Inflammation Collaborative is fortunate to have a multitude of advisors, partners, collaborators, and peer organizations doing amazing work in their respective fields. We collaborate to leverage each other’s expertise and resources, driving real scientific progress and improving the lives of patients across all our collective audiences and communities.

Learn more about the Brain Inflammation Collaborative here: www.braininflammation.org

CareEvolution is a health technology company specializing in healthcare data interoperability and digital clinical research platforms. The company provides tools and platforms to aggregate, standardize, and analyze health data from various sources, including electronic health records (EHRs), wearable devices, and claims data. These platforms enable applications such as digital clinical trials, participant-centric research, and advanced healthcare analytics, serving clients like health plans, provider networks, and researchers. CareEvolution’s solutions support over 200 million people globally, facilitating use cases like clinical trial management, real-world data integration, and population health analytics.

MyDataHelps is a digital health research platform developed by CareEvolution designed to facilitate patient-centered clinical research. It enables researchers to collect, aggregate, and analyze health data from diverse sources, including electronic health records (EHRs), wearables, surveys, and patient-reported outcomes. The platform supports digital clinical trials, real-world data studies, and patient engagement by providing tools for secure data sharing, participant recruitment, and data visualization. MyDataHelps aims to streamline research processes, improve data interoperability, and empower participants to contribute their health data to studies, with a focus on privacy and scalability.

unhide® is built within MyDataHelps, leveraging the available features, security, and functionality of one of the most trusted platforms in the industry.

Everything we do for patients and researchers alike is supported by generous philanthropic gifts and is provided free of charge. Patients can use our platform to track their symptoms, monitor treatment effectiveness, and generate reports to share with their medical providers. Patients can also choose which research studies to participate in. 

Researchers may apply for a variety of in-kind resources, including access to existing data collected by Solve Together and unhide®, umbrella IRB approval, assistance with study structure, data cleaning and analysis, the publication process, and more.

Managing a research platform, developing clinical research protocols that meet the highest level of scrutiny, data cleaning and analysis, navigating publication, and meeting the administrative and regulatory requirements of clinical research require substantial resources and infrastructure.

unhide® is powered by the Brain Inflammation Collaborative, a 501(c)(3) nonprofit organization. We rely on the generosity of people like you to continue this work. We do not charge patients or researchers for our resources or services. We do not sell data or earn a profit on any of our work. 

The clinical research space is a challenging field for organizations without financial support from special interests. We believe in patient-led, NOT profit-driven, research. 

While the term “registry” can have multiple meanings, the two primary types, according to the NIH, are contact registries and natural history registries. unhide® is both. It is a natural history registry designed to collect uniform clinical data about post-infectious diseases. It is a contact registry used to recruit participants for clinical studies. The term “registry” alone is not specific enough to capture all the features of unhide®, as it encompasses natural history, recruitment, and a method for patients to create reports to share with their doctors, link wearable devices, track symptoms, and monitor their health patterns.

This is a research platform because the design of this platform, which incorporates survey instruments, allows for researchers to conduct analyses and test hypotheses on the data that patients provide. The reason that we designed this as a research instrument is to better allow studies to be developed and published, leading to better outcomes for the patient community.

Brain inflammation has been linked to mental health symptoms and conditions like long COVID, autoimmune diseases (e.g., rheumatoid arthritis, POTS), and infections (e.g., strep). Our research seeks to uncover these connections to improve patient outcomes.

We are collecting real-world patient data to study 30+ diagnoses that share overlapping symptoms and attributes. This integrated approach allows us to connect insights across conditions, patient ages, and treatments. By comparing patients with different diagnoses on the same platform, we accelerate the discovery of findings and advance progress in areas such as treatment development. 

For example, if research leads to better clinical standards for identifying and treating brain fog—a symptom present in many of the conditions we study—that advancement could impact all conditions that share brain fog as a symptom.

Participation and Eligibility

Participation is open to anyone, regardless of health status or diagnoses. To be able to participate, you must meet the following requirements: 

  • Be over the age of 2 years old:
    • Parents and guardians can enroll their young children (ages 2-6) and participate on their behalf; school age children (ages 7–12) can complete surveys and track symptoms side-by-side with their parents/guardians; teens (ages 13+) can enroll themselves with parental consent.
  • Currently living in the United States
  • Have internet access and a connected device, like a smartphone or computer
  • Be able to participate in English (stay tuned for updates about participation in Spanish).

Yes, you may still be eligible to participate. In fact, you do not need a diagnosis at all – healthy people can use the platform to track their overall well-being and participate in research as well. Healthy controls are vital research participants!

Our research and platform are designed to focus on the following conditions, and children and adults with these disorders may find symptom tracking especially helpful: 

  • 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.

Symptoms of these conditions may include chronic fatigue, brain fog or cognitive issues, headaches, gastrointestinal problems, abnormal eating behavior, and even depression, anxiety, and other unexplained mood or behavioral changes.  

Click here to sign up, then access the platform on the web or through the MyDataHelps mobile app, available in Google Play or the Apple App Store.

Sign up to participate on unhide®! It’s free, simple, and designed by and for patients. You can choose from the clinical research studies available and participate in research that’s most relevant to you, from wherever you are. 

unhide® is currently available to US residents only, but we hope to expand internationally in the future. Sign up for our newsletter to stay in touch!

In the meantime, if you would like to track your symptoms and/or use pacing notifications, you can use the web version of Symptom Shark. If you live in Australia, Canada, Kenya, or the UK, you can access all the features of Symptom Shark through the mobile app “MyDataHelps,” available on iOS and Android.

If you reside in Canada, Austria, Germany, Norway, Ireland, the Netherlands, Poland, the United Kingdom, Mexico, or Australia, the Visible Long Covid ME/CFS app, available for iPhone and Android, is another product designed for individuals with ME/CFS, Long Covid, and related conditions.

Using The Platform

unhide® is a continuation of Solve M.E.’s Solve Together platform combined with unhide®. Solve Together includes any data collected through the You + ME Registry. Your participation start date may be backdated to when you joined one of those platforms.

Pacing notifications can only be sent when Symptom Shark receives data from Fitbit or Apple Health. Sometimes, there can be delays in syncing that result in late notifications. If you are using an Apple Health device (Apple Watch, Garmin, Withings, etc.) data can only sync when your phone is unlocked. If data is not coming in, follow these steps to troubleshoot:

  • Check that your phone has Bluetooth enabled.
  • Check that your wearable device is syncing with its app (e.g., the Fitbit or Garmin app)
  • Wait a few minutes. Especially when you first sync a device, it may take a few minutes for the data to be received.

If you are connecting via Apple Health, there are some additional troubleshooting steps you can take:

  • Ensure that your device is connecting to Apple Health. For instance, if you are using a Garmin or Withings device, you will need to go into the Garmin or Withings app to enable the device to send data to Apple Health.
  • Check that you have enabled the right permissions for MyDataHelps to access Apple Health data:
    • Open the “Settings” app
    • Select “Privacy”
    • Select “Health”
    • Select “MyDataHelps”
    • Enable the categories of data you would like to share with Symptom Shark
    • Ensure that the data you are looking for is showing in Apple Health and the Symptom Shark “Activity” view. For instance, the steps you see in Apple Health for yesterday should match the steps you see in Symptom Shark for the same day.

No problem! Check out our YouTube page for some more “how-to” videos or contact us at help@braininflammation.org.

Data and Privacy

We prioritize your privacy. All data is securely stored and anonymized for research purposes. Review the CareEvolution Privacy and Use Policy for details.

Private health information and all information that can be linked to you as an individual will be stored within a secure database managed by CareEvolution or on a fully HIPAA-compliant cloud server. 

For research purposes, your data will be anonymous by removing any and all personally identifiable information (such as your email address, any specific dates or geographical information, etc.). This anonymous, or de-identified, health information may be shared with select, vetted, and approved researchers and will continue to be made available for future research projects unless you contact us and request that we remove your data from our database.

Your data will never be used for advertising and is securely stored in the United States by CareEvolution. You may be asked to share information such as:

  • Your medical history
  • heart-pulse
  • Information from digital health devices, such as your heart rate
  • chart
  • App analytics and usage information

     

You may withdraw and request data deletion at any time. CareEvolution uses appropriate physical, organizational, and technical safeguards to protect the confidentiality and integrity of the information we collect.

Read more about data security and privacy here.

Yes, you can easily export your data into a printable or electronic format to share with your healthcare provider.  Check out our Youtube video to see how to access the PDFs.

You can stop participating at any time by simply discontinuing use of any of the surveys and symptom tracking. 

If you no longer wish to have your data used in research studies, you may contact BIC and request to be removed from the database. At your request, all of your data will be removed from active research, although anonymized data already used in published studies may remain.

No problem! Upon joining the platform, you will be consenting to participate in data collection. Separately, you will be offered the option of connecting your medical record and/or wearable devices. These are optional and not required for participation.

Research and Impact

We study more than 30 different conditions, focusing on overlapping symptoms and traits across diagnoses. We collaborate with academic institutions, researchers, and advocacy organizations that share our research goals or one or more of the conditions we study. unhide® itself allows for longitudinal symptom tracking and the study of the “natural history” of many chronic diseases and conditions side by side. This is important because the long-term outcomes of many chronic conditions, particularly those affecting children, have never been studied or followed up in this manner. Your contribution will help to understand the trajectories of these related chronic conditions across the lifespan. 

Our research also pairs your survey and symptom tracking data together with researchers who study immune markers (such as cytokines and antibodies), the microbiome, and genetics to identify the triggers of brain inflammation and associated mental health symptoms. If you would like to participate in one of these types of biospecimen studies with our collaborators, you may choose to do so through the app as these additional collaborative studies become available.

unhide® aims to simplify and reduce the burden of participating in clinical research for patients. Patients can choose which research studies to participate in, enter data, complete assessments, and more, all from their smartphone or computer. Our platform is one of the first of its kind to offer this opportunity to pediatric patients.

Because unhide® is maintained by the Brain Inflammation Collaborative, a non-profit organization, unlike most health-tracking platforms, we are committed to privacy and producing findings that make a difference in real people’s lives who are struggling with chronic health conditions. We’re here for patients, not profit.

Many of the conditions that the Brain Inflammation Collaborative studies do not yet have well-defined diagnostic tests, and patients can suffer for years without treatment or even a diagnosis before finding help or care. Better data will lead to more accurate diagnoses and care, and your participation in our studies will help us achieve this together. 

Defining symptoms, disease onset, and trajectory will improve diagnostics as well as clinical trial outcomes and endpoints. This is a crucial aspect of what the Brain Inflammation Collaborative aims to achieve. By integrating your symptom tracking, wearable device data, and survey answers, we will be able to better evaluate current diagnostics and develop new treatments, and build a better future together. 

Real-World Data (RWD) refers to data routinely collected outside the context of a clinical trial. This may include patient reports, which can be collected over a longer period, as well as passive collection sources, such as electronic medical records or wearable devices. This long-term data provides insight into what happens in the “real world,” what a patient experiences in their day-to-day lives beyond the specific context of a clinical trial, and can help inform clinical research. RWD collection is typically more agile and affordable than clinical trial data. Moreover, clinical trials usually allow participants to access their own data, whereas real-world data is accessible to the patients who provide it. (It is yours, after all!)

While clinical trial data is excellent for testing new treatments, therapeutics are developed based on hypotheses and targets. This means maintaining rigorous controls to ensure no outside variables are interfering with the data is important. Many of the conditions we are focused on are not yet ready for that phase of research. We need to understand more about the illnesses and their possible subtypes to form hypotheses regarding treatment methods. To accelerate the research process toward treatment and diagnostic protocols, real-world data is a critical piece of the puzzle.

There are not often clinical trials conducted that study conditions that cause neuroinflammatory disease, or examine neuroinflammatory symptoms. That’s one of the many reasons we do what we do! To see what we’re studying right now, visit www.unhidenow.org/research-opportunities.

When we prepare to launch a new study or when one of our collaborators is investigating a relevant treatment, we’ll share information with you as quickly as possible. Follow us on social media or sign up for our engagement portal to get the most up-to-date information at your fingertips! 

Individual results are not shared, but aggregated findings may be published on our website or through the Brain Inflammation Collaborative to inform participants and the public.

Researcher Questions

unhide® is a tremendous, live database of engaged patients that allows people with chronic conditions to participate in research and track their symptoms from childhood through old age.  In addition to the thousands of participants currently enrolled, the unhide database also includes historical longitudinal data collected from 2010 onwards from people with ME and/or Long COVID as part of the You + ME platform by our partner non-profit, SolveME. 

unhide® may be used to recruit participants for clinical trials, conduct survey research, collect longitudinal health data in partnership with biospecimen collection, study data from wearable devices in correlation with longitudinal symptom tracking, identify data trends over time, and more. 

We are actively seeking research partners interested in the extensive dataset we have collected from dedicated patients with ME and Long COVID. 

While we are not currently awarding monetary grants or salary support, we offer in-kind service grants to qualified applicants, which include subject recruitment efforts, IRB sponsorship, user testing, survey design and development, data aggregation and cleaning, publication support for publications arising from Brain Inflammation Collaborative research, and more.  Please reach out for additional information at help@braininflammation.org.

You do not have to be affiliated with a university or research institution to apply to use unhide® for research purposes. However, you must adhere to ethical research standards that are upheld by the Brain Inflammation Collaborative as well as our IRB, and must have research or clinical credentials and an established track record in researching, advocating for, and/or treating the populations affected by neuroinflammatory symptoms and conditions. 

I have a question that wasn’t answered here. How can I contact someone who can assist me?

Contact us at the form here or email help@braininflammation.org.