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This study is an investigation of the neurologic, immunologic, and rheumatologic markers of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). PANS is a condition characterized by the abrupt, dramatic onset of obsessive compulsive disorder (OCD) and/or eating restriction accompanied by equally abrupt and severe co-morbid neuropsychiatric symptoms, which include anxiety, emotional lability, depression, irritability, aggression, oppositionality, deterioration in school performance, behavioral (developmental) regression, sensory amplification, movement abnormalities, sleep disturbance, and urinary frequency. PANS is thought to be caused by infection, inflammation, or alternate triggers that is associated with a brain response that leads to these symptoms. The purpose of this study is to examine specific neurologic, immunologic, rheumatologic, and genomic, components in children with the acute-onset of psychiatric symptoms. This research may begin to uncover a much larger story of autoimmune processes that are involved in psychiatric disorders of childhood. By better understanding the etiologic components of psychiatric phenomenon, future treatments may be better targeted to underlying causes.
The investigators will recruit 500 children, 1-18 years old at onset with PANS/PANDAS. They will be treatment naive and within one month of onset/exacerbation. The 500 children with PANS will be gender- and age-matched to 100 healthy children, to allow examination of immunologic, neurologic, genomic, and behavioral differences between these two groups of children.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| PANS group | 500 children, 1-18 years old at onset with a strict diagnosis of PANS/PANDAS will be recruited | ||
| Health Controls | 100 healthy children age- and gender- matched to the PANS group will be recruited |
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| Measure | Description | Time Frame |
|---|---|---|
| Cerebral blood flow | The investigators will report results of altered cerebral blood flow from patients with PANS. | Through study completion, up to 12 years |
| EEG patterns | The investigators will report results of abnormal EEG patterns from patients with PANS. All data will be obtained through the review of medical records, which are created during the routine clinical care of patients. | Through study completion, up to 12 years |
| Rapid Eye Movement (REM) motor disinhibition | The investigators will report results of REM motor disinhibition from polysomnography studies. All data will be obtained through the review of medical records, which are created during the routine clinical care of patients. | Through study completion, up to 12 years |
| Measure | Description | Time Frame |
|---|---|---|
| Global Impairment Scores | All data will be obtained through the review of medical records, which are created during the routine clinical care of patients. | Every 2-4 weeks for up to 12 years |
| Children's Yale-Brown Obsessive Compulsive Scale (CY-BOCS) |
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Inclusion Criteria:
Children with PANS
Healthy Controls
Exclusion Criteria:
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The investigators to enroll 500 children with PANS/PANDAS and 100 healthy controls. Children's parents will also be enrolled to report information about their children as well as their own caregiver burden. The 500 patients with PANS will meet diagnostic criteria. These patients are targeted because this study is seeking to specifically assess the immunologic and neurological markers of PANS.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Joanne Cheung | Contact | pansresearch@stanford.edu | ||
| Ellen Spartz | Contact |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Stanford University | Recruiting | Palo Alto | California | 94305-5906 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| Background | Swedo SE, Leckman JF, Rose NR (2012) From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Pediatr Therapeut 2:113. doi: 10.4172/2161-0665.1000113 | ||
| 25325534 | Background | 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. | |
| 25150567 |
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Data is available upon request as allowed by the Stanford Institutional Review board.
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| ID | Term |
|---|---|
| C000631768 | Pediatric acute-onset neuropsychiatric syndrome |
| C537163 | Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections |
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Peripheral blood mononuclear cells (PBMCs) are collected from patients during flares and remissions. Samples will be used for genome-wide association studies (GWAS), time-of-flight mass spectrometry (CyTOF), TCR analyses, antibody profiling, and monocyte characterizations.
All data will be obtained through the review of medical records, which are created during the routine clinical care of patients.
| Every 2-4 weeks for up to 12 years |
| Columbia Impairment Scale | All data will be obtained through the review of medical records, which are created during the routine clinical care of patients. | Every 2-4 weeks for up to 12 years |
| Caregiver Burden Inventory | All data will be obtained through the review of medical records, which are created during the routine clinical care of patients. | Every 2-4 weeks for up to 12 years |
| Neurological findings | The investigators will report data from neurological exam findings, including milk maid grip, chorea, choreiform movements of arms and legs, apraxia, overflow dystonia, truncal instability, piano-playing fingers, glabellar sign, etc. All data will be obtained through the review of medical records, which are created during the routine clinical care of patients. These results will be aggregated to report the number of participants with abnormal neurological findings. | Every 2-4 weeks for up to 12 years |
| Background |
| Murphy TK, Gerardi DM, Leckman JF. Pediatric acute-onset neuropsychiatric syndrome. Psychiatr Clin North Am. 2014 Sep;37(3):353-74. doi: 10.1016/j.psc.2014.06.001. |