Revealing the connection between brain inflammation and mental health.
Join us in leading the charge HEAD ON to drive research to the answers that are long overdue.
Patients Powering Change. Now.
Welcome to the Unhide™ Project.
The first online and ongoing clinical research study of its kind.
Brain inflammation, as the result of autoimmune processes, infection, allergy, or injury, can sometimes trigger or mimic common mental health symptoms such as depression, anxiety, OCD or even behavioral changes. This connection between brain inflammation and mental health is often misdiagnosed by healthcare providers leading to confusion and delay of care that the patient deserves. Or even the wrong care.
The pain and anguish of these debilitating and misdiagnosed mental health symptoms can have devastating effects on the lives of patients and families – it’s all too common of a story. But we feel strongly that the solution to brain inflammation and mental health is hidden in plain sight. Our goal is to assemble the largest patient driven data and biosample resource to date to uncover the answers needed to further advancements in diagnosis, treatment and prevention.
Mental health and brain inflammation research have been underrepresented for far too long. No long-term, real-world study has ever been done to track individuals suffering from brain inflammation and mental health issues. The Unhide™ Project is leading the charge to change that. Now.
Interested in learning more? Here’s how it works…
The Project
A simple to use online digital platform that easily tracks patient stories, symptoms, life events, and bio-samples all in one place in an effort to look for patterns and triggers in both mental and physical health.
Bio-Samples
Participants may be asked to voluntarily provide a non-invasive biological sample, such as urine or saliva, to be analyzed by our researchers.
Mental Health Connection
Understanding brain inflammation and mental health symptoms can be difficult and confusing to families, clinicians – and even researchers.
Frequently Asked Questions
Eligibility
Currently we are in the pilot phase of testing our platform. We hope to begin enrolling on a larger scale later this fall into early winter. Sign up for our newsletter to watch for any enrollment announcements!
For now, only English-speaking U.S. citizens are eligible. We are working hard to add additional languages and countries and are committed to making sure underserved communities are able to access and utilize our platform.Patients aged 2 to 89 are eligible to participate.
Patients aged 2 to 89 are eligible to participate.
Patients under the age of 18 will need a parent or legal guardian to complete the enrollment process for them once an enrollment email with instructions has been received.
Patients aged 13 to 17 will also be required to assent to their participation. The assent form will be included in the platform once you receive our enrollment email and instructions – it is an easy to follow, step by step process.
Those with a confirmed or suspected diagnosis of:
- Long-Haul COVID
- POTS
- ME/CFS
- OCD
- Anorexia Nervosa
- PANDAS/PANS
- Tourette’s
- Narcolepsy
- Autoimmune Encephalitis
At-risk siblings are eligible. These siblings include those under the age of 18 of a patient with one or more of the diagnosed or suspected illnesses listed but are not currently experiencing symptoms themselves. They could potentially be at risk of developing the illnesses, and we hope to determine biomarkers or early warning signs that could be useful in finding better ways to prevent brain inflammation illness.
We are also seeking healthy individuals willing to participate as a healthy control. We would encourage you to participate and commit to at least 3 months of data entry and a bio-sample donation.
Participants must have consistent access to a cell phone, tablet or PC, and the internet. This is an online or app-based platform that requires internet access and the technology needed to enter data.
Yes, you may still be eligible to participate. If you or your child are struggling with one or more of the following symptoms, even without a diagnosis, you could be eligible to enroll:
- Unexplained mood or behavior changes
- OCD
- Abnormal restrictive eating behavior
- Seizures/convulsions
- Anxiety disorders
- Depression
- Intrusive thoughts
- Brain fog or cognitive issues
- Chronic fatigue
- Motor & vocal tics
You will be asked for more information on why you feel you have a suspected diagnosis. Our trained enrollment team will have a few simple questions to help you determine whether or not you are a good fit for the study.
Once the pilot phase of our study ends, a “Do I Qualify?” button will become visible at the top of our web page. Sign up for our newsletter to receive updates of when this will happen.
Once our “Do I Qualify?” button is live, you will be asked a few simple online qualification questions (see Who Is Eligible to Participate above). If you meet the requirements of these simple questions, you will be asked to enter your contact information and a member of our enrollment team will reach out to you. You will then be asked about your diagnosis or suspected diagnosis at that time.
Once approved by the study enrollment team, you will receive an email with the detailed instructions you need to complete enrollment including consent and assent procedures.
Although we strive to have you or your child enrolled within a 1 to 3 day window, we need to verify you meet the requirements of a diagnosis or suspected diagnosis before allowing you to enter the on-going clinical study. This allows us to screen patients to ensure the best fit for the study. During peak enrollment times, this turnaround time could take longer – we will keep you updated when there are delays.
Your participation in this research study is voluntary, and you can choose not to participate or to stop at any time.
The risks or discomfort associated with this study are minimal. It is possible that recalling or writing about these symptoms or circumstances may make you feel uncomfortable. If this happens, you may skip questions that are upsetting or end your participation altogether.
Take a Tour of the Unhide™ Project App
The project is an ongoing clinical research study to better understand the connection between brain inflammation and mental health. We combine real world patient-entered-data with real time patient bio-samples to provide researchers with the information they need to better understand how brain inflammation impacts patients through-out the course of their illness.
Although there is no guarantee that this research may directly benefit you or your child, you are helping to identify potential diagnosis criteria, effective treatments, and possible prevention methods that can prove to be life changing for those impacted by brain inflammation
The Unhide™ Project will continuously provide updates within the platform as you login and visit our Welcome Page. Our newsletters will also keep everyone up to date as to news and happenings within the project. Our website will include any important announcements or updates to our FAQs as needed.
There will be resources included for helping you through any difficulties you might encounter.
But you can always reach us at enroll@braininflammationcollaborative.org with questions. Once our pilot phase ends in the fall/early winter and enrollment opens, you will just click “Do I Qualify?” to get started!
Definitely! You can review our consent form here. And if you still have questions about the study, you can email us at enroll@braininflammationcollaborative.org.
The initial forms will take up to 30 minutes to complete. No other week of the study will require that large of a time commitment. You will be asked for updated information at intervals over time: some weekly, some every two weeks and some every three months. The platform will automatically send you reminders, either through email or app push notifications, when it is time to provide additional information. If you forget to fill out a form, no worries! We appreciate any of your efforts to help us collect data that can help fight brain inflammation.
Patient Benefits
Along with the ease of collecting and organizing the often overwhelming amount of symptoms, test results, and treatments tried, the patient can expect the following:
- Individual printable pdfs that summarize your data entered into the registry platform. You can print by test results, medications, symptoms, and more. Tracking stress, caregiver strain, lab results, and medical history has never been easier.
- A way to look for triggers, patterns, trends, and insights into you or your child’s own health data. Comparable data reports for you or your child to see comparisons to other participants in the study based on gender, diagnosis, location and other anonymized variables.
- Personal Diary Records. This is a place to add more details about your life by including videos, sketches or even handwriting samples. These can be invaluable sources for you to show your doctor to help them understand all the things that are happening on a daily basis. Having things to back up your everyday experiences are crucial.
- SmartDevice Connectability. You can connect devices such as your Apple Watch or Oura Ring to integrate additional lifestyle data. This helps you simplify data collection and events or changes you may have forgotten to record for yourself or for the patient you care for.
- Lifestyle Tools. Our Lifestyles Page can help you connect with tools for relaxation and other insights – like tracking cognitive brain issues or even calorie counting. We help you do this through tools like My Plate, Lumosity, or Insight Timer. This is a completely optional added benefit.
- Contribution to Community. Knowledge that you are contributing to a much greater cause as we help to drive the research that is needed for finding the solutions to diagnosing, treating and even preventing brain inflammation.
- Fulfill an Important Need for Your Family. With the Unhide™ Project platform, tracking you or your loved one’s patient journey and sharing the insights has never been easier. Together we can fill the need to find the solutions to solving the mysteries of brain inflammation and mental illness.
Donating your time to participate in the Unhide™ Project as a healthy control is a great way to give back to the community. You complete the same surveys as a patient to help us determine what are normal mental health feelings and symptoms compared to what the patient is experiencing.
And donating “healthy control” bio-samples are also very important! This is an area of great need and is oftentimes difficult to obtain for our researchers.
Double check with the organization requesting your volunteer or community service hours – this may be a great way for you to complete these types of requirements. We can give you a letter that states your participation level and time volunteered. Email us at info@braininflammationcollaborative.org for more information.
Donating Samples
All bio-sample donations are voluntary. No one will ever be required to donate a sample
Currently all samples are non-invasive samples such as urine, saliva, or feces. Donating a sample is completely voluntary and not required if you are not comfortable donating.
The Unhide™ Project will notify you when you may be eligible to contribute a sample. We will have an appropriate kit sent to you for sample collection with instructions of how to collect and where to return. The process will be simple with easy-to-follow instructions.
Privacy & Sponsorship
We will always take reasonable precautions to protect the privacy and security of your samples and information collected. Although we will provide certain symptom, genetic, genomic and/or other medical information to researchers, all information will be de-identified and anonymous – obvious personal identifiers are removed and stored separately from health information as we encrypt all participant data.
Researchers will only access anonymized information on our secure platform. See our platform privacy policy here. We track the activity of all researchers who use our platform and they are only allowed to access any data with our approval. We also require researchers seeking access to anonymized data to submit an application and subsequent approval by our Board of Directors. The use of any bio-samples will include an additional level of approval and researcher vetting.
Bio-samples collected from patients and participants are labeled with a coded number and then de-identified to protect patient privacy and confidentiality. Our bio-bank includes industry-standard tools to protect the privacy of your samples and information.
Our entire research staff is required to be certified in Human Subjects Research training and will always work to keep any personal patient information safe and secure.
The information we collect from any bio-samples, patient entered data, medical records or results you upload will be included in a database that will only be shared with our approved researchers in a de-identified fashion. This combination of patient entered data, historical data, and biological information for a large cohort of participants is unprecedented in the area of brain inflammation. It will help researchers better understand the causes and potential diagnosis, treatment and prevention of brain inflammation.
Brain inflammation has largely been underrepresented in large scale research. The Unhide™ Project looks to change that.
The Brain Inflammation Collaborative sponsors the Unhide™ Project. They have received a grant from a private family foundation that has agreed to fund a large portion of operating costs each year for the next 5 years. Any additional funding is obtained through public and private donations. Other, separate, research projects that are related to finding the answers we need to understand brain inflammation may be funded by government grants or pharma companies looking to give back to the community.
Absolutely not. We are a 501(c)(3) nonprofit organization that looks for public and private funding and government grants to further our mission of finding the answers surrounding brain inflammation. We will never sell your private information for profit. Ever. All patient data is used for anonymous clinical research purposes.
Patients, at risk siblings, and healthy controls will not be compensated for participating in the Unhide™ Project. You will be contributing to the greater good of cutting edge research surrounding brain inflammation and mental health research.
The Unhide™ Project is sponsored by the Brain Inflammation Collaborative. Their mission is to revolutionize the diagnosis and treatment of neuroinflammatory disease through coordinated research that connects patients and researchers through centralized patient data. In 2021, the Brain Inflammation Collaborative received a grant from a private family foundation that has agreed to fund a large portion of operating costs for the online patient research study each year for the next 5 years. Any additional funding needed will need to be obtained through public and private donations. Please consider helping fund this mission.
Other research projects sponsored by the Brain Inflammation Collaborative, related to finding the answers needed to understanding brain inflammation, may also be funded by public and private donations, government grants, or pharma companies looking to give back to the community. Help us today to make a difference in uncovering the connection between brain inflammation and mental health.
Our Partners
We Would Love to Hear From You
As you continue on this journey, we will be right by your side! Your well-being is our main priority.
Although we do not offer clinical care, we’ll be here to closely follow up with your treatment and other
health-related experiences. Don’t hesitate to contact us with any questions or feedback.
NOTE: The Unhide™ Project platform is not a medical device, and is not intended to diagnose, treat, cure, monitor or prevent medical conditions or illnesses. Do not make any major health changes without consulting your doctor or a medical professional.
