Welcome to the ImPatient EmPowered™ 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 ImPatient EmPowered™ Project is leading the charge to change that. Now.
Interested in learning more? Here’s how it works…
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.
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
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
- Anorexia Nervosa
- 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
- Abnormal restrictive eating behavior
- Anxiety disorders
- 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.
The Brain Inflammation Collaborative sponsors the ImPatient EmPowered™ 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.
The ImPatient EmPowered™ 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.
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.