PANS/PANDAS/Related Inflammatory Brain Disorders Treatment and Flare Evaluation Checklist (PTEC©) – A Free Digital Resource for Tracking Immune-Mediated Neuropsychiatric Illnesses and Inflammatory Brain Disorders

PTEC© Checklist

PTEC© Checklist

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

Only authorized members of the research team will have access to data you choose to provide. Your information is stored securely using multiple layers of security. Researchers may analyze combined (aggregate) data from all participants to better understand inflammatory brain disorders. Findings may be presented at scientific conferences or published in peer-reviewed journals. Any data that are shared publicly or published will be completely de-identified. No individual participant will be directly or indirectly identifiable. If you have questions, please contact: Andrey Vyshedskiy, Ph.D., email: vysha@bu.edu or phone: (617) 433-8577.

I am still worried about privacy/security.

We understand. Individuals who are concerned about entering their email address are encouraged to create an alias email address to track their data across time. We would encourage you to use the same alias email each time as your anonymous and de-identified data can support better understanding of PANS/PANDAS.

Who do I contact if I have general questions or the form isn’t working well?

First, please clear your cache or open in another browser. Then, please email: info@neuroimmune.org.

Receive monthly reminders to complete the PTEC©

The PANS/PANDAS/Related Inflammatory Brain Disorders Treatment and Flare Evaluation Checklist (PTEC©) is not a diagnostic checklist but rather a tool 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 in April, and 60 in July, their symptoms have worsened. If they score 50 in April and 12 in July, 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.

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 and related inflammatory brain disorders 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.

The validated PTEC© symptom instrument remained unchanged throughout the study. The online PTEC© also includes additional longitudinal research questions that collect information about participant characteristics, treatments, flares, disease course, and other clinical factors to support interpretation of symptom changes over time. These research questions are analyzed separately and are not incorporated into the calculation of the PTEC© score.

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

Only authorized members of the research team will have access to identifiable information you choose to provide. Your information is stored securely using multiple layers of security.

Researchers may analyze de-identified, aggregated data from all participants to better understand inflammatory brain disorders. Findings may be presented at scientific conferences or published in peer-reviewed journals. Any data that are shared publicly or published will be completely de-identified. No individual participant will be directly or indirectly identifiable.

If you have questions about how your information is used or protected, please contact:

Andrey Vyshedskiy, PhD
Email: vysha@bu.edu
Phone: (617) 433-8577


I am still worried about privacy/security.

We understand. Individuals who are concerned about entering their email address are encouraged to create an alias email address to track their data across time. We would encourage you to use the same alias email each time as your anonymous and de-identified data can support better understanding of PANS/PANDAS and related inflammatory brain disorders. Every family’s experience with treatment contains valuable information that can help advance the field. By systematically collecting real-world data on symptoms, medications, supplements, and treatment outcomes through PTEC©, we can identify patterns and potential treatment signals that may not be visible in individual cases alone. Researchers can then use these signals to prioritize therapies for deeper scientific investigation and future clinical studies. While no single report can determine what works, together our community can help build the evidence needed to accelerate research and move closer to more effective, personalized treatments for PANS/PANDAS and related inflammatory brain disorders.


Who do I contact if I have general questions or the form isn’t working well?

First, please clear your cache or open in another browser. Then, please email: info@neuroimmune.org.


HIPAA Notice and Information for Clinicians

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.

Freeman J, Flessner CA, Garcia A. The Children’s Yale-Brown Obsessive Compulsive Scale: reliability and validity for use among 5 to 8 year olds with obsessive-compulsive disorder. J Abnorm Child Psychol. 2011 Aug;39(6):877-83. doi: 10.1007/s10802-011-9494-6. PMID: 21340599.

Bejerot S, Edman G, Anckarsäter H, Berglund G, Gillberg C, Hofvander B, Humble MB, Mörtberg E, Råstam M, Ståhlberg O, Frisén L. The Brief Obsessive-Compulsive Scale (BOCS): a self-report scale for OCD and obsessive-compulsive related disorders. Nord J Psychiatry. 2014 Nov;68(8):549-59. doi: 10.3109/08039488.2014.884631. Epub 2014 Feb 25. PMID: 24568661; PMCID: PMC4221004.

Novara C, Pardini S, Cardona F, Pastore M. Comparing Models of the Children’s Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) in an Italian Clinical Sample. Front Psychiatry. 2020 Aug 6;11:615. doi: 10.3389/fpsyt.2020.00615. PMID: 32848897; PMCID: PMC7424057.

Frankovich J, Thienemann M, Pearlstein J, Crable A, Brown K, Chang K. Multidisciplinary clinic dedicated to treating youth with pediatric acute-onset neuropsychiatric syndrome: presenting characteristics of the first 47 consecutive patients. J Child Adolesc Psychopharmacol. 2015 Feb;25(1):38-47. doi: 10.1089/cap.2014.0081. PMID: 25695943; PMCID: PMC4340335.

Frankovich J, Thienemann M, Rana S, Chang K. Five youth with pediatric acute-onset neuropsychiatric syndrome of differing etiologies. J Child Adolesc Psychopharmacol. 2015 Feb;25(1):31-7. doi: 10.1089/cap.2014.0056. PMID: 25695942; PMCID: PMC4442568.

Swedo SE, Seidlitz J, Kovacevic M, Latimer ME, Hommer R, Lougee L, Grant P. Clinical presentation of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections in research and community settings. J Child Adolesc Psychopharmacol. 2015 Feb; 25(1):26-30. doi: 10.1089/cap.2014.0073. PMID: 25695941; PMCID: PMC4340334.

Murphy TK, Patel PD, McGuire JF, Kennel A, Mutch PJ, Parker-Athill EC, Hanks CE, Lewin AB, Storch EA, Toufexis MD, Dadlani GH, Rodriguez CA. Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. J Child Adolesc Psychopharmacol. 2015 Feb; 25(1):14-25. doi: 10.1089/cap.2014.0062. Epub 2014 Oct 14. PMID: 25314221; PMCID: PMC4340632.

Chang K, Koplewicz HS, Steingard R. Special issue on pediatric acute-onset neuropsychiatric syndrome. J Child Adolesc Psychopharmacol. 2015; 25(1):1–2. doi:10.1089/cap.2015.2511

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.

Orefici G, Cardona F, Cox CJ, Cunningham MW. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). 2016 Feb 10. In: Ferretti JJ, Stevens DL, Fischetti VA, editors. Streptococcus pyogenes: Basic Biology to Clinical Manifestations [Internet]. Oklahoma City (OK): University of Oklahoma Health Sciences Center; 2016–. PMID: 26866234.

Swedo SE, Leonard HL, Garvey M, Mittleman B, Allen AJ, Perlmutter S, Lougee L, Dow S, Zamkoff J, Dubbert BK. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases. Am J Psychiatry. 1998 Feb; 155(2):264-71. doi: 10.1176/ajp.155.2.264. Erratum in: Am J Psychiatry 1998 Apr; 155(4):578. PMID: 9464208.

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