unhide® Project: PANS/PANDAS Medication Questionnaire
About This Project
The PANS/PANDAS Medication Questionnaire (PMQ) is a study developed by Drs. Denise Calaprice and Jenny Frankovich at the Stanford Immune Behavioral Clinic and the Brain Inflammation Collaborative to bridge the gap between individual experiences and large-scale systematic research.
What the PMQ Captures
The questionnaire utilizes a semi-quantitative framework to translate personal health journeys into actionable scientific data. It focuses specifically on:
- Medications of Special Interest*: Therapies that are FDA-approved to treat autoimmune diseases that currently lack large-scale clinical trial data, but show anecdotal success in treating PANS, PANDAS, and related neuroimmune disorders. Find a full list of the medications of interest at the bottom of this page.
- Granular Symptom Mapping: Beyond simple “better or worse” metrics, the PMQ tracks specific behavioral/cognitive and physical shifts in response to treatment.
- Longitudinal Context: It captures the nuances of dosage, duration, and the specific sequence of recovery, providing a multidimensional view of the patient’s response.
Why It Matters
For many families and patients, the journey navigating neuroimmune disorders is marked by trial and error. The PMQ ensures that these experiences are not lost in isolated cases, but are instead aggregated to build a collective roadmap for recovery. By participating, patients can provide the evidence base needed to start moving “off-label” treatments into the realm of standardized, evidence-based care.
Research Impact: Data from the PMQ allow the Stanford team and their collaborators to justify the need for rigorous trials, potentially shortening the time it takes for breakthrough treatments to become widely accessible.
Research Goals
In the rapidly evolving field of pediatric neuroimmunology, many patients are prescribed innovative therapies long before formal clinical trials can be completed. The PMQ captures this “real-world evidence” to achieve two primary goals:
- Clinical Awareness: By synthesizing detailed case-study information, researchers can publish early findings, providing clinicians worldwide with immediate insights into emerging treatment trends.
- Research Prioritization: The data acts as a compass for the scientific community, identifying which “medications of special interest” show the most promise, thereby streamlining the design and funding of future prospective clinical trials.
Brain Inflammation Collaboration Lead Researchers
The PANS/PANDAS Medication Questionnaire was developed by the Brain Inflammation Collaborative Research Team, led by the individuals below:
Denise Calaprice, PhD
Co-founder & Senior Program Advisor
Dr. Calaprice is a clinical researcher at Stanford University’s Immune Behavioral Health Clinic and a Co-founder of the Brain Inflammation Collaborative. A former NIH fellow and NARSAD Young Investigator, her early research on the psychoneuroimmunology of childhood anxiety and mood disorders helped shape her career-long focus on immune dysregulation and brain–immune interactions. She has since directed clinical research and development programs in immunology and neuroscience across academia, government, and industry. Through BIC, she continues to advance innovative, patient-centered approaches to understanding and treating neuroinflammatory and behavioral disorders.
Jenny Frankovich, MD
Clinical Professor at Stanford University/Lucile Packard Children’s Hospital (LPCH)
Dr. Frankovich is a Clinical Professor in the Department of Pediatrics, Division of Allergy, Immunology, and Rheumatology (AIR) at Stanford University/Lucile Packard Children’s Hospital (LPCH). Her clinical expertise is in systemic inflammatory and autoimmune diseases that co-occur with psychiatric symptoms. She completed her training in pediatrics, pediatric rheumatology, and clinical epidemiology at Stanford University/LPCH. She directs the Stanford Immune-Behavioral Health Program (2012- present), where she and her psychiatry/psychology collaborators have created a longitudinal clinical database and biorepository of patient and healthy control biospecimens. In addition to generating clinical data to better understand immune-behavioral health conditions, she is collaborating with basic science labs that aim to understand the immunological underpinnings of post-infectious neuropsychiatric conditions, including PANS and related conditions.
Megan L. Fitzgerald, PhD
Scientific Director & Principal Investigator
Dr. Fitzgerald is Scientific Director and Principal Investigator at the Brain Inflammation Collaborative, where she studies how immune activity influences mood, cognition, and neurological health. Her prior research at Weill Cornell, Mount Sinai, and Columbia University focused on neuroanatomy, neural stem cells, and the biology of suicide risk, earning NIH and NARSAD Young Investigator Awards. After developing Long COVID herself, she pivoted to patient-led research, co-leading large-scale studies on post-viral illness through the Patient-Led Research Collaborative. Her current work bridges neuroscience and lived experience to uncover the mechanisms linking inflammation to brain and behavioral symptoms.
Christina Moon, AB
Clinical Research Assistant
Christina Moon is a Clinical Research Associate with the Brain Inflammation Collaborative. She earned her A.B. in Sociology with a minor in Chinese Culture & Language from Princeton University. Christina is passionate about advancing health equity and improving inclusivity in medical research, focusing on empowering patients through collaboration, education, and advocacy. Her work supports BIC’s mission to make research more accessible and representative of diverse patient experiences.
Ryan Terrari
Research Intern
Ryan Terreri is a freshman at UCLA studying math of computations. He has been a part of the Brain Inflammation Collaborative research team since June 2024 and is passionate about advocacy for patients in research. Ryan is fascinated by the story that data can tell and is interested in learning more about neuroimmunological research.
What Do We Ask?
The PANS/PANDAS Medication Questionnaire includes questions like:
- How long have you been taking the medication(s) of special interest*?
- What physical and cognitive/behavioral symptoms did you experience before starting the medication(s) of special interest (e.g., joint pain, headaches/migraines, abdominal pain, depression/anxiety, fatigue)?
- The frequency, dosage, adherence/compliance, and duration of use for the medication(s) of special interest
- Side effects and your overall experience with the medication(s)
The questionnaire takes around 20 minutes to complete and can be done on a computer or mobile device. If you’re busy or get tired, you can save your progress and return to it later.
Who Can Join?
Anyone who is eligible to join unhide® and is 7 years of age or older can take part. Participants under 18* will need a parent or legal guardian to assist with consent and completing the survey.
*dependent on legal age (age of majority) by location
Anyone with any of the 30+ conditions associated with brain inflammation and their caregivers are invited to contribute their knowledge and experience. The information you have won by hard experience is vital to helping researchers understand how different treatment approaches affect these conditions.
How Can I Help?
By sharing your experiences through the PMQ, you can help researchers uncover how specific treatments impact the complex emotional and cognitive symptoms associated with PANS and PANDAS.
Your real-world response to these medications is a vital piece of the puzzle that helps researchers define these conditions and determine which therapies truly work.
- Sign up or log in to the unhide® Platform.
- Complete the Basic Information and Medical Conditions surveys under the “Surveys” section of your dashboard.
- Then, the PANS/PANDAS Medication Questionnaire (PMQ) will appear under the “Surveys” section.
- Take the PMQ at your own pace. It will take about 20 minutes to complete per medication. You can pause and return to finish it at any time.
What's In It For Me?
By taking part, you’ll:
- Contribute directly to research that could improve understanding, diagnosis, and treatment of mood and behavioral problems.
- Help shape the future of care for people with PANS and PANDAS.
- Receive an optional summary of study findings once data collection and analysis are complete.
The more people who share their treatment experiences, the stronger our data becomes.
Please consider sharing the PMQ with friends, family, or online communities affected by PANS and/or PANDAS (including individuals with ASD who also meet PANS criteria).
Together, we can transform individual stories into the clinical evidence needed to standardize care and accelerate healing.
Learn more about the PANS/PANDAS Medication Questionnaire by visiting our blog post.
Help Us Spread The Word
The more people who share their journey, the stronger and more representative our findings will be.
Please consider sharing this study with friends, family, or online communities affected by infection-associated chronic conditions (IACCs), including Long COVID, ME/CFS, Chronic Lyme, PANS/PANDAS, and related disorders, as well as those affected by other complex chronic conditions, like fibromyalgia.
Together, we can move beyond “trial and error” to build a safer, more effective map for recovery. Your data helps the entire community understand which treatments offer true relief and which may cause harm.
To learn more about the What Helped, What Didn’t survey and our latest research initiatives, check out our blog or sign up for the platform.
Medications We Are Studying
- Biologics
- Abatacept (Orencia)
- Adalimumab (Humira, Amjevita, Cyltezo, Hyrimoz, Hadlima, Abrilada, Yusimry, Idacio, Yuflyma
- Anakinra (Kineret)
- Belimumab (Benlysta)
- Canakinumab (Ilaris)
- Certolizumab pegol (Cimzia)
- Etanercept (Enbrel, Enbrel SureClick, Enbrel Mini, Erelzi, Eticovo)
- Golimumab (Simponi • Simponi Aria)
- Guselkumab (Tremfya)
- Infliximab (Avsola • Inflectra • Remicade • Renflexis, Ixifi)
- Ixekizumab (Taltz)
- Obinutuzumab (Gazyva)
- Risankizumab (Skyrizi)
- Rituximab (Rituxan • Riabni • Ruxience • Truxima)
- Sarilumab (Kevzara)
- Secukinumab (Cosentyx)
- Tocilizumab (Actemra, Tofidence, Tyenne)
- Ustekinumab (Stelara, Wezlana)
- DMARDs (Disease-Modifying Anti-Rheumatic Drugs)
- Apremilast (Otezla)
- Azathioprine (Imuran)
- Cyclophosphamide (Cytoxan)
- Cyclosporine (Neoral)
- Hydroxychloroquine (Plaquenil)
- Leflunomide (Arava)
- Methotrexate (Rheumatrex • Trexall • Xatmep)
- Mycophenolate mofetil (CellCept)
- Mycophenolic acid delayed-release (Myfortic)
- Sulfasalazine (Azulfidine • SAS-500 • Sulfa Dyne • Sulfazine)
- JAK Inhibitors
- Abrocitinib (Cibinqo)
- Baricitinib (Olumiant)
- Ritlecitinib (Litfulo)
- Ruxolitinib (Jakafi)
- Tofacitinib (Xeljanz)
- Upadacitinib (Rinvoq)
- NSAIDs (Non-steroidal Anti-inflammatory Drugs)
- Azathioprine (Imuran)
- Celecoxib (Celebrex)
- Diclofenac (Cataflam • Zipsor • Cambia)
- Indomethacin (Indocin)
- Meloxicam (Mobic • Vivlodex • Anjeso • Qmiiz ODI)
- Naproxen (Aleve, Naprosyn)
- Sulindac (Clinoril)
- Immunoglobulin Therapies
- IVIG (Gammagard Liquid, Gamunex-C, Privigen, Octagam, Flebogamma DIF, Gammaplex, Panzyga, Bivigam, Xembif)
- SCIG (Hizentra, Cuvitru, HyQvia, Xembify, Cutaquig)
- Antihistamines
- Cetirizine (Zyrtec)
- Other
- Levothyroxine (Synthroid)
- Lithium (Eskalith, Lithobid)
- Liothyronine (Cytomel, Triostat)
- Azithromycin (Zithromax, Z-pak)
- Nicotine Patches (Nicoderm, Habitrol)
- Semaglutide (Subcutaneous) (Ozempic, Wegovy)
- Semaglutide (Oral Route) (Rybelsus)
- Dulaglutide (Trulicity)
- Liraglutide (Saxenda, Victoza)
- Exenatide (Bydureon, Byetta)
- Tirzepatide (Mounjaro, Zepbound)
