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New study tracks kids with Sudden-Onset PANS/PANDAS to uncover disease patterns

NCT ID NCT06811935

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study aims to see if it's possible to enroll and keep children with PANS or PANDAS in a year-long observation. Researchers will track symptoms and outcomes to better understand how these conditions develop and change over time. About 30 children aged 3 to 17 will participate at UW Health or Dartmouth Health.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 30 people

The number the study aims to enrol. It can still change while the study runs.

Started

Feb 2025

Expected to finish

Dec 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Children between the ages of 3 and 17 years with PANS or PANDAS.

Ages

3 to 17 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria (All participants): * Child age 3-17 years old * Child and their parent/guardian are able to complete all study activities in English * Potential participant's family plans to be followed within UW Health or Dartmouth Health for at least one year Inclusion Criteria (In primary care group only): * Pediatric patient who is a current member of the primary care population at either UW Health or Dartmouth Health * Abrupt onset of symptoms (within 7 days) occurring in the past 3 months. Willing to come in-person for at least the baseline visit. * Suspected diagnosis of PANS or PANDAS based on published criteria: * PANS: (A) Abrupt, dramatic, overnight onset of obsessive compulsive disorder (OCD) or severely restricted food intake; (B) concurrent abrupt onset of additional severe neuropsychiatric symptoms from at least 2 of the following 7 categories: 1. Anxiety 2. Emotional lability and/or depression 3. Irritability, aggression and/or severe oppositional behaviors 4. Developmental regression 5. Deterioration in school performance 6. Sensory or motor abnormalities, including heightened sensitivity to sensory stimuli, hallucinations, dysgraphia, complex motor, and/or vocal tics 7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency consistent with a known neurologic or medical disorder. AND (C) symptoms not better explained by another medical or neurologic disorder * PANDAS * Presence of OCD and/or tic disorder * Pre-pubertal onset of symptoms (i.e., 3-12 years old) * Episodic course characterized by very acute and severe onset and dramatic symptom exacerbations * Neurologic abnormalities present during symptom exacerbations-motoric hyperactivity and adventitious movements * Temporal relationships between group A streptococcus (GAS) infections and symptom exacerbations Inclusion Criteria - External to Primary Care Group ONLY: * Abrupt onset of symptoms (within 7 days) occurring in the past 4 months. * Confirmed diagnosis of PANS or PANDAS based on published criteria (see above). Exclusion Criteria (all participants): * History of tics, OCD or food restriction/avoidance that contradicts a history of sudden onset or was present before the onset of this investigation * Current symptom(s) of Pica * Previous participation in the study * Not suitable for study participation at the discretion of the site investigator (e.g., the child does not have verbal or cognitive ability adequate for self-report assessment) * Patient or family is unable to complete the study questionnaires or procedures in English as the primary language

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    2 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Dartmouth Hitchcock Medical Center

    RECRUITING

    Lebanon, New Hampshire, 03766, United States

  • UW School of Medicine and Public Health

    RECRUITING

    Madison, Wisconsin, 53792, United States

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Other studies related to the condition(s) this trial covers.