PANS/PANDAS/Related Inflammatory Brain Disorders Treatment and Flare Evaluation Checklist (PTEC©) – A Free Digital Tool

About the PTEC©

The PANS/PANDAS/Related Inflammatory Brain Disorders Treatment and Flare Evaluation Checklist (PTEC) is not a diagnostic checklist but rather a tool for comparison of patient symptoms at two or more points in time.

This tool was created to track improvements and worsening of symptoms across time in the same individual. PTEC scores range from 0 (no symptoms in any category) to 306 (most significant symptoms in every category). Higher scores correspond to more severe symptoms. Lower scores correspond to more mild symptoms. For instance, if a patient scores 20 on June 1 and 60 on July 1, their symptoms have worsened. If they score 50 on June 1 and 12 on July 1, their symptoms have improved.

The PTEC it is intended to be filled out by parents, patients, and teachers and shared with clinicians to track symptoms. Since assessment of severity of symptoms is somewhat subjective, the tool is meant to be filled out by the same person across time (ie. if a parent fills out the checklist prior to a treatment, the parent would also fill out the checklist after the treatment starts. If a patient fills out the checklist prior to a treatment, the patient would also fill out the checklist after the treatment starts.)

The PTEC addresses a critical gap in clinical practice by providing a standardized method for comparing patient symptoms at two or more points in time, tracking changes before and after treatment interventions, monitoring symptoms during flares versus stable periods, or establishing comprehensive baseline measurements.

Bridging Communication Gaps

One of the PTEC’s most valuable features is its ability to facilitate better communication between families and clinicians. This tool is intended to be shared with clinicians, creating a clear, objective picture of symptom progression that can inform treatment decisions and care planning.

Development of the PTEC

Inspired by the Autism Treatment Evaluation Checklist (ATEC) created by Dr. Bernard Rimland and Dr. Stephen Edelson of Autism Research Institute, the PTEC is intended as a tool to compare pre-treatments scores to post-treatment scores as well as to compare periods of relative stability/remission to flares following illness or other triggers. The usefulness of the ATEC to the autism community was a major catalyst in developing the PTEC for the PANS/PANDAS community. Many physicians have requested an easy to fill out digital tool to help track symptoms and responses and this tool is a response to that request. Like the ATEC, the PTEC it is intended to be filled out by parents, patients, and teachers and shared with physicians to track symptoms. This tool was created with input from scientific and clinical advisors following an extensive literature review (references below) of PANS/PANDAS as well as the Childhood Y-BOCS scale. Subsequently, 225 patient/families participated in a study leading to validation and peer-reviewed publication. We are happy to offer this tool free of charge now that it has undergone rigorous study and demonstrated strong reliability.

© 2025 Neuroimmune Foundation. All rights reserved.

HIPAA Notice

If you are a practitioner, or you work for a practitioner, please make sure you comply with HIPAA and applicable state privacy regulations (or, if outside of the United States, privacy regulations in your country) before placing your client’s or patient’s personal health information into this database. If you are unsure about such compliance, please seek advice from an attorney. In most cases a consent form, agreed upon and signed by your patient/client, is necessary. Neuroimmune Foundation in no way intends to warrant or represent that this consent form is legally sufficient for every factual situation, so please consult with an attorney to determine how to comply with HIPAA and other applicable state privacy regulations in your practice.

THANK YOU for developing the PTEC. It’s so useful for me to learn from parents what they’re seeing and then show parents where improvement is coming from when sometimes it’s hard for them to see it on the inside of their often chaotic, stressful worlds.

I’ve attached, no PHI, a side-by-side of 6 weeks between PTECs left is late October, and right is yesterday… and when I shared this with parents, they were amazed to see how things changed. Yes, the vibes were “better” but not the like 80% decrease in symptoms that we see when doing an actual objective measure. Thanks! 

Phil Boucher, MD
Pediatrician, Nebraska

PTEC Tool

Who will have access to mine or my child’s and/or medical information?

  • Analyzed cumulative data across all participants may be analyzed, studied, and published in research journal papers or conference proceedings. All published data is completely anonymous such that no individual may be directly or indirectly identified. Data is stored securely on the back end of this website.

Who do I contact if I have questions about this?

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Chang K, Frankovich J, Cooperstock M, Cunningham MW, Latimer ME, Murphy TK, Pasternack M, Thienemann M, Williams K, Walter J, Swedo SE; PANS Collaborative Consortium. Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 2015 Feb; 25(1):3-13. doi: 10.1089/cap.2014.0084. Epub 2014 Oct 17. PMID: 25325534; PMCID: PMC4340805.

Margo Thienemann, Tanya Murphy, James Leckman, Richard Shaw, Kyle Williams, Cynthia Kapphahn, Jennifer Frankovich, Daniel Geller, Gail Bernstein, Kiki Chang, Josephine Elia, and Susan Swedo. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I—Psychiatric and Behavioral Interventions. Journal of Child and Adolescent Psychopharmacology. Sep 2017.566-573. https://doi.org/10.1089/cap.2016.0145

Jennifer Frankovich, Susan Swedo, Tanya Murphy, Russell C. Dale, Dritan Agalliu, Kyle Williams, Michael Daines, Mady Hornig, Harry Chugani, Terence Sanger, Eyal Muscal, Mark Pasternack, Michael Cooperstock, Hayley Gans, Yujuan Zhang, Madeleine Cunningham, Gail Bernstein, Reuven Bromberg, Theresa Willett, Kayla Brown, Bahare Farhadian, Kiki Chang, Daniel Geller, Joseph Hernandez, Janell Sherr, Richard Shaw, Elizabeth Latimer, James Leckman, Margo Thienemann, and PANS/PANDAS Consortium. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part II—Use of Immunomodulatory Therapies. Journal of Child and Adolescent Psychopharmacology. Sep 2017.574-593. https://doi.org/10.1089/cap.2016.0148

Michael S. Cooperstock, Susan E. Swedo, Mark S. Pasternack, Tanya K. Murphy, and for the PANS/PANDAS Consortium. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Prevention of Infections. Journal of Child and Adolescent Psychopharmacology. Sep 2017. 594-606. https://doi.org/10.1089/cap.2016.0151

Kovacevic M, Grant P, Swedo SE. Use of intravenous immunoglobulin in the treatment of twelve youths with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. J Child Adolesc Psychopharmacol. 2015 Feb;25(1):65-9. doi: 10.1089/cap.2014.0067. Epub 2015 Feb 6. PMID: 25658609; PMCID: PMC4340809.

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