What Is PANDAS/PANS?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) are complex conditions in children that can appear very suddenly, often after an infection. Both PANS and PANDAS are defined by obsessive-compulsive symptoms, as well as anxiety, changes in eating, and other neuropsychiatric and physical symptoms.
The primary difference between PANS and PANDAS is the trigger; while PANS can be caused by a variety of infections or even an unknown trigger, PANDAS is a specific subtype of PANS that is directly linked to a Strep infection. They also differ in how they’re diagnosed. PANDAS has a more defined set of criteria, including a clear connection to Streptococcal infection and a pattern of symptoms that come and go, whereas PANS is a broader diagnosis based on sudden symptom onset without needing a confirmed cause. While most children with PANS/PANDAS do not have developmental disorders, there are many cases in which patients with Autism Spectrum Disorders (ASD) experience “regressions” that meet PANS criteria, and these patients often benefit from the same treatment protocols used for PANS.
The Brain Inflammation Collaborative (BIC) was created to bring new life to the scientific world around how we approach research – and how it can improve the lives of patients. PANS/PANDAS remains under-researched, making it difficult to treat. BIC’s PANS/PANDAS Medication Questionnaire seeks to learn more about the treatment of this condition in order to improve our understanding of how to treat it. We hope that this inclusive research will help more people with PANS/PANDAS find healing and hope.
What Is the PANS/PANDAS Medication Questionnaire (PMQ)?
The PANS/PANDAS Medication Questionnaire (PMQ) is part of unhide®, a research initiative developed by the Brain Inflammation Collaborative. Unhide® is a digital health tool that brings together data from symptom tracking, wearable devices, health history, validated survey instruments, and custom surveys to support patients and help researchers. With unhide®, researchers conduct investigations aimed at better understanding the problems with thinking and mood that can emerge as symptoms of conditions such as autoimmune disease, infection-associated chronic illness (including Long COVID, ME/CFS, PANDAS, and PANS), and related disorders.
The PANS/PANDAS Medication Questionnaire (PMQ) specifically collects detailed case studies from patients willing to share their experiences with one or more treatments that may be beneficial for this population.
Why Does This Research Matter?
Many people living with complex neuroimmune conditions share a common and frustrating experience: the treatments that may help them most are often out of reach. Such patients may benefit from FDA-approved treatments for other autoimmune and inflammatory conditions with a similar biological basis. Without broader clinical research surrounding whether these treatments are effective and well-tolerated in patients with neuroimmunologic disorders, a critical knowledge gap continues to impede access.
That gap has real consequences:
- Patients may be unaware that these treatment options exist, or may lack the information needed to have informed conversations with their providers.
- Practitioners may not have the clinical guidelines or experience to feel confident prescribing these medications in a neuroimmune context.
- Insurers may deny coverage due to the absence of randomized clinical trials and other large-scale supporting data.
The PANS/PANDAS Medication Questionnaire (PMQ) directly addresses this gap. By systematically collecting treatment experiences from patients across the country, researchers can publish case series and summaries that educate both healthcare providers and patients, covering details such as dosing regimens, co-medications, the nature and timing of positive and negative effects, and patterns in which patients responded best to specific treatments.
Looking further ahead, the data collected through this study is intended to serve as pilot data for future grant proposals and clinical trial planning. Rigorous clinical trials require substantial resources and are rarely pursued without compelling preliminary data, and this study is designed to help build exactly that foundation.
“So many potentially effective medications for understudied conditions are already out there, but not often prescribed because we simply don’t have the information needed to know how and when to use them. Systematic collection of individual patients’ experiences with such drugs is the first step in gathering this needed body of information.”
– Denise Calaprise, Ph.D.
Brain Inflammation Collaborative Co-founder & Senior Advisor
What Information Is Collected?
Participants share a brief medical history along with demographic and physical characteristics. Additionally, information about their past and current treatments, and details about their emotional and physical symptoms are collected. Together, this information builds a comprehensive picture that can reveal meaningful patterns across a wide range of patient experiences. To find out more about the study, check out PMQ unhide Website Page
The data gathered through this study have the potential to directly shape the future of care for people with neuroimmune conditions. Navigating the plethora of medications for these understudied conditions can be tiresome, and building a robust pilot dataset will bring definitive clinical trials — and ultimately better, more accessible treatment options — meaningfully closer.
Every shared case contributes to a growing evidence base that can transform the current fragmented clinical picture into actionable guidance for patients and providers alike.
Written By
Ryan Terreri
Data Analyst Intern, Brain Inflammation Collaborative
