Does a Periaqueductal Gray-vagus Nerve Interface Malfunction Explain the Nat hx With Its Numerous Co-morbidities?

NCT ID: NCT06616363

Last Updated: 2025-09-26

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

120 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-05-29

Study Completion Date

2028-07-31

Brief Summary

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Postural tachycardia syndrome (POTS) is a common and disabling disorder among adolescents. No epidemiologic data exist to support the often cited 0.5 to 2% prevalence. Case series suggest 3 to 5 times greater incidence in girls than boys. POTS is defined in children as daily chronic symptoms of orthostatic intolerance and a 40 bpm rise in heart rate in the first 10 minutes of a tilt study in the absence of orthostatic hypotension. POTS often develops after an acute event like an illness, infection, immunization, head trauma, psychological trauma or surgery. Natural history data are absent for POTS, though some outcome studies exist. Orthostatic symptoms improve in the majority and heart rate changes improve in 38% at 1 year. A 2-year follow up showed small improvement in comorbid symptoms of POTS in a 12 subject cohort followed yearly. In a pediatric 5-year outcome follow up questionnaire study, 86% of adolescents with POTS reported resolved, improved, or intermittent, symptoms, with primarily physical rather than mental health complaints.

Detailed Description

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The current definition of POTS highlights the peripheral mechanistic emphasis of 30 years of studies exploring cardio- and cerebro-vascular, immunologic, mast cell activation, connective tissue and other physiologic mechanisms. The classification of POTS itself also assumes a peripheral etiology, typically including neuropathic, hyperadrenergic, hypovolemic and sometimes immune POTS. However, a central nervous system (CNS) etiology might better account for what is knowns about POTS currently: (1) POTS often follows an infection, physical or psychological trauma. (2) POTS occurs most often in post-menarche adolescent girls volume redistribution differs across subjects (4) exercise, cognitive behavioral therapy provide best long-term outcomes (5) co-morbid disorders, typically overlapping pain conditions such as migraine headache, fibromyalgia, and most functional gastrointestinal disorders (FGID), often dominate the clinical picture. COPCs are typically considered to reflect a CNS etiology.

Because it coordinates the autonomic, motor and pain responses to an acute threat, the midbrain periaqueductal gray region (PAG) is an attractive candidate whose dysfunction could potentially explain all major features of POTS, including the frequent antecedent emotional or physical threat, the POTS core autonomic changes, and the co-morbid pain disorders. The PAG interprets threats as escapable or inescapable, specifically activating a different column for each response type.

Conditions

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POTS - Postural Orthostatic Tachycardia Syndrome

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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60 POTS Postural Tachycardia Syndrome (POTS)

POTS patients will be current patients of the study practitioners within the autonomic, cardiology PM\&R clinics and autonomic laboratory. This cohort may receive a codified treatment plan within the following 7 treatment categories which are also standard of care procedures based on clinical recommendations: (1) salt, fluid and diet management; (2) exercise program with or without PT; (3) cognitive behavioral therapy or other counseling; (4) vagal stimulation forms like yoga, breathing exercises, relaxation, microauricular stimulation; (5) pharmacotherapy for pressure maintenance; (6) medications for pain and headache; (7) medications for the gastrointestinal issues.

Questionnaires to be competed

Intervention Type BEHAVIORAL

* The Pain Coping Questionnaire short form
* Functional Disability Inventory (FDI), the primary clinical outcome measure.
* COMPASS-31 and orthostatic hypotension modified for POTS.
* The Pain Response Inventory (PRI)PROMIS Depression
* GAD-7 for anxiety
* Varni/Thompson Pediatric Pain Questionnaire
* Child and Parent Reports of Post-Traumatic Symptoms (CROPS/PROPS)
* Pain Catastrophizing Scale (PCS-C)
* Detailed account of natural history and evolution of POTS and COPCs through MEDYSA (facilitates the assessment of specific syndromic diagnoses based on published criteria, rather than organ-based classification of symptoms)

Provide list of medication and lifetime events

Intervention Type BEHAVIORAL

Participants will provide a list of all medications taken at each visit time, lifetime history of infections, traumas, and other significant life events.

Use phone App to record new life events

Intervention Type BEHAVIORAL

Subjects will also record new life events, minor traumas, entrance into a flare and menses in Ilumivu's EMA (Ecological Momentary Assessment) phone App

Will wear an activity monitor

Intervention Type DEVICE

Participants will have an activity monitor loaned for the duration of the study to track their physical activity.

Periodic 24-hour urine sodium check

Intervention Type OTHER

POTS patients will have a periodic 24-hour urine sodium check to determine compliance to intake of salt.

A fMRI scan

Intervention Type DIAGNOSTIC_TEST

• Participants will complete a fMRI scan without contrast and complete a looming animacy threat task; participants judge the valence of images via button press as they perceive the image.

A bedside tilt test will be performed

Intervention Type DIAGNOSTIC_TEST

A bedside tilt test will be performed where blood pressure will be recorded supine and upright positions to confirm/exclude POTS.

IV placed to collect blood samples

Intervention Type OTHER

• An IV will be place for collection of 4 blood samples, about 12 mL of blood. For each position (lying and standing) the study team will draw 2 tubes each times with 3 mL of blood, for a total of 4 lab tubes (12 mL). Physical exams to assess the 18-tender points described by the American College of Rheumatology for the diagnosis of fibromyalgia and hypermobility/Ehlers-Danlos Syndrome (EDS) exam will be performed in all subjects.

Stool Sample

Intervention Type OTHER

• Participants will provide a stool biospecimen sample at each in-person visit. Stool will be collected in a hat and sample will be swabbed with the swab placed directly into PrimeStore collection tube and the remainder of the sample discarded

40 Post-Infection cohort

Post-Infection participants will be identified through Best Practice Alerts through EPIC, and referrals from hospitalist and gastroenterology inpatient services. Post-Infection cohorts will be approached up to 6 weeks after they are released from the hospital, to ensure they are healthy enough to participate.

Questionnaires to be competed

Intervention Type BEHAVIORAL

* The Pain Coping Questionnaire short form
* Functional Disability Inventory (FDI), the primary clinical outcome measure.
* COMPASS-31 and orthostatic hypotension modified for POTS.
* The Pain Response Inventory (PRI)PROMIS Depression
* GAD-7 for anxiety
* Varni/Thompson Pediatric Pain Questionnaire
* Child and Parent Reports of Post-Traumatic Symptoms (CROPS/PROPS)
* Pain Catastrophizing Scale (PCS-C)
* Detailed account of natural history and evolution of POTS and COPCs through MEDYSA (facilitates the assessment of specific syndromic diagnoses based on published criteria, rather than organ-based classification of symptoms)

Provide list of medication and lifetime events

Intervention Type BEHAVIORAL

Participants will provide a list of all medications taken at each visit time, lifetime history of infections, traumas, and other significant life events.

Use phone App to record new life events

Intervention Type BEHAVIORAL

Subjects will also record new life events, minor traumas, entrance into a flare and menses in Ilumivu's EMA (Ecological Momentary Assessment) phone App

Will wear an activity monitor

Intervention Type DEVICE

Participants will have an activity monitor loaned for the duration of the study to track their physical activity.

A fMRI scan

Intervention Type DIAGNOSTIC_TEST

• Participants will complete a fMRI scan without contrast and complete a looming animacy threat task; participants judge the valence of images via button press as they perceive the image.

A bedside tilt test will be performed

Intervention Type DIAGNOSTIC_TEST

A bedside tilt test will be performed where blood pressure will be recorded supine and upright positions to confirm/exclude POTS.

IV placed to collect blood samples

Intervention Type OTHER

• An IV will be place for collection of 4 blood samples, about 12 mL of blood. For each position (lying and standing) the study team will draw 2 tubes each times with 3 mL of blood, for a total of 4 lab tubes (12 mL). Physical exams to assess the 18-tender points described by the American College of Rheumatology for the diagnosis of fibromyalgia and hypermobility/Ehlers-Danlos Syndrome (EDS) exam will be performed in all subjects.

Stool Sample

Intervention Type OTHER

• Participants will provide a stool biospecimen sample at each in-person visit. Stool will be collected in a hat and sample will be swabbed with the swab placed directly into PrimeStore collection tube and the remainder of the sample discarded

20 healthy controls

Healthy control participants will be recruited from local communities using flyers, social media and using EPIC Best Practice Alerts.

Questionnaires to be competed

Intervention Type BEHAVIORAL

* The Pain Coping Questionnaire short form
* Functional Disability Inventory (FDI), the primary clinical outcome measure.
* COMPASS-31 and orthostatic hypotension modified for POTS.
* The Pain Response Inventory (PRI)PROMIS Depression
* GAD-7 for anxiety
* Varni/Thompson Pediatric Pain Questionnaire
* Child and Parent Reports of Post-Traumatic Symptoms (CROPS/PROPS)
* Pain Catastrophizing Scale (PCS-C)
* Detailed account of natural history and evolution of POTS and COPCs through MEDYSA (facilitates the assessment of specific syndromic diagnoses based on published criteria, rather than organ-based classification of symptoms)

Provide list of medication and lifetime events

Intervention Type BEHAVIORAL

Participants will provide a list of all medications taken at each visit time, lifetime history of infections, traumas, and other significant life events.

Use phone App to record new life events

Intervention Type BEHAVIORAL

Subjects will also record new life events, minor traumas, entrance into a flare and menses in Ilumivu's EMA (Ecological Momentary Assessment) phone App

Will wear an activity monitor

Intervention Type DEVICE

Participants will have an activity monitor loaned for the duration of the study to track their physical activity.

A fMRI scan

Intervention Type DIAGNOSTIC_TEST

• Participants will complete a fMRI scan without contrast and complete a looming animacy threat task; participants judge the valence of images via button press as they perceive the image.

A bedside tilt test will be performed

Intervention Type DIAGNOSTIC_TEST

A bedside tilt test will be performed where blood pressure will be recorded supine and upright positions to confirm/exclude POTS.

IV placed to collect blood samples

Intervention Type OTHER

• An IV will be place for collection of 4 blood samples, about 12 mL of blood. For each position (lying and standing) the study team will draw 2 tubes each times with 3 mL of blood, for a total of 4 lab tubes (12 mL). Physical exams to assess the 18-tender points described by the American College of Rheumatology for the diagnosis of fibromyalgia and hypermobility/Ehlers-Danlos Syndrome (EDS) exam will be performed in all subjects.

Stool Sample

Intervention Type OTHER

• Participants will provide a stool biospecimen sample at each in-person visit. Stool will be collected in a hat and sample will be swabbed with the swab placed directly into PrimeStore collection tube and the remainder of the sample discarded

Interventions

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Questionnaires to be competed

* The Pain Coping Questionnaire short form
* Functional Disability Inventory (FDI), the primary clinical outcome measure.
* COMPASS-31 and orthostatic hypotension modified for POTS.
* The Pain Response Inventory (PRI)PROMIS Depression
* GAD-7 for anxiety
* Varni/Thompson Pediatric Pain Questionnaire
* Child and Parent Reports of Post-Traumatic Symptoms (CROPS/PROPS)
* Pain Catastrophizing Scale (PCS-C)
* Detailed account of natural history and evolution of POTS and COPCs through MEDYSA (facilitates the assessment of specific syndromic diagnoses based on published criteria, rather than organ-based classification of symptoms)

Intervention Type BEHAVIORAL

Provide list of medication and lifetime events

Participants will provide a list of all medications taken at each visit time, lifetime history of infections, traumas, and other significant life events.

Intervention Type BEHAVIORAL

Use phone App to record new life events

Subjects will also record new life events, minor traumas, entrance into a flare and menses in Ilumivu's EMA (Ecological Momentary Assessment) phone App

Intervention Type BEHAVIORAL

Will wear an activity monitor

Participants will have an activity monitor loaned for the duration of the study to track their physical activity.

Intervention Type DEVICE

Periodic 24-hour urine sodium check

POTS patients will have a periodic 24-hour urine sodium check to determine compliance to intake of salt.

Intervention Type OTHER

A fMRI scan

• Participants will complete a fMRI scan without contrast and complete a looming animacy threat task; participants judge the valence of images via button press as they perceive the image.

Intervention Type DIAGNOSTIC_TEST

A bedside tilt test will be performed

A bedside tilt test will be performed where blood pressure will be recorded supine and upright positions to confirm/exclude POTS.

Intervention Type DIAGNOSTIC_TEST

IV placed to collect blood samples

• An IV will be place for collection of 4 blood samples, about 12 mL of blood. For each position (lying and standing) the study team will draw 2 tubes each times with 3 mL of blood, for a total of 4 lab tubes (12 mL). Physical exams to assess the 18-tender points described by the American College of Rheumatology for the diagnosis of fibromyalgia and hypermobility/Ehlers-Danlos Syndrome (EDS) exam will be performed in all subjects.

Intervention Type OTHER

Stool Sample

• Participants will provide a stool biospecimen sample at each in-person visit. Stool will be collected in a hat and sample will be swabbed with the swab placed directly into PrimeStore collection tube and the remainder of the sample discarded

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* symptomatic ≥ 40 bpm rise in heart rate in the first 10 min of a tilt table study without a drop in blood pressure
* Clinical symptoms of orthostatic intolerance


* acute upper respiratory or gastrointestinal infection that required admission to the acute care units but not requiring an ICU stay


* Apparently healthy with no known chronic illnesses

Exclusion Criteria

* Pregnant or breastfeeding
* Cognitive defects that preclude answering questionnaires or following assessment directions
* Other chronic diseases
* Unstable medical conditions
* Use of narcotics
* Limited English proficiency
* Investigator discretion that participant would not be suitable to participate
* A phone older than 5 years old or unable to support EMA software

POST INFECTION


* Pregnant or breastfeeding
* Chronic prescriptions, history of POTS or orthostatic symptoms, recent inpatient psychiatric admissions, substance use disorder, trauma such as a motor vehicle accident, surgery, or other significant physical or emotional trauma in the last 5 years
* Cognitive defects that preclude answering questionnaires or following assessment directions
* Other unstable chronic diseases
* Unstable medical conditions
* Use of narcotics
* Severe depression or anxiety (untreated / unstable)
* Limited English proficiency
* Investigator discretion that participant would not be suitable to participate
* A phone older than 5 years old or unable to support EMA software

HEALTHY CONTROLS


* Pregnant or breastfeeding
* History of POTS or orthostatic symptoms, migraines, fibromyalgia, chronic fatigue, PTSD. Functional gastrointestinal disorders, fainting, dysmenorrhea, or other chronic pain syndrome, inpatient psychiatric admissions, substance use disorder, trauma such as a motor vehicle accident, surgery, or other significant physical or emotional trauma in the last 5 years
* Cognitive defects that preclude answering questionnaires or following assessment directions
* Other chronic unstable diseases
* Unstable medical conditions
* Use of narcotics
* Severe depression or anxiety (untreated / unstable)
* Limited English proficiency
* Investigator discretion that participant would not be suitable to participate
* A phone older than 5 years old or unable to support EMA software
Minimum Eligible Age

12 Years

Maximum Eligible Age

21 Years

Eligible Sex

FEMALE

Accepts Healthy Volunteers

Yes

Sponsors

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National Heart, Lung, and Blood Institute (NHLBI)

NIH

Sponsor Role collaborator

Virginia Commonwealth University

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Gisela Chelimsky

Role: PRINCIPAL_INVESTIGATOR

Virginia Commonwealth University

Locations

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Virginia Commonwealth University

Richmond, Virginia, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Gisela Chelimsky

Role: CONTACT

804-827-3427

Bhakti Dave

Role: CONTACT

804-827-3427

Facility Contacts

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Gisela Chelimsky

Role: primary

804-827-3427

Bhakti Dave,

Role: backup

804-828-7802

Other Identifiers

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1R01HL163577

Identifier Type: NIH

Identifier Source: secondary_id

View Link

HM20029682

Identifier Type: -

Identifier Source: org_study_id

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