Research Grant Summary – PCARES

Submitted to: Foundation Grant
Principal Investigator: Craig Coleby, MD
Co-Investigators: Peter Rowe, MD (Johns Hopkins), Melissa Cortez, MD (University of Utah)
Reviewer: Phil Fischer, MD (Mayo Clinic)
Research Team: Brittany Jorgensen (NP), RN, MA trained in autonomic testing

Purpose

This study will improve how doctors diagnose Postural Orthostatic Tachycardia Syndrome (POTS) and other orthostatic intolerance conditions in children and teens, helping reduce delays and misdiagnoses.

Background

• POTS causes dizziness, rapid heart rate, fatigue, and headaches when standing.

• Onset typically starts around age 14; ~90% of pediatric patients are female.

• Many are misdiagnosed or told it’s psychological.

• Common tests like tilt table testing are expensive, hard to access, and may not reflect real-life symptoms.

• Standing tests may offer a simpler, more accurate option—especially in primary care.

Research Goal

To compare three tests (tilt table, passive standing, and active standing) to find the most reliable, accessible, and accurate method for diagnosing POTS in pediatric patients.

Study Design

• Participants: 100 children with POTS (ages 11–17) + 100 healthy controls

• Tests: Each participant completes all three tests in random order on one day:

  • Passive Standing – leaning against a wall

  • Active Standing – standing unsupported

  • Tilt Table – strapped to a table that tilts upright

• Heart rate, blood pressure, and symptoms tracked throughout

• Symptom scores tracked using the Coleby Pediatric POTS (CPP) Score (0–100 scale)

• Functional Disability Inventory (FDI) used to assess daily impact

Expected Outcomes

• Standing tests will be as sensitive as tilt testing for detecting POTS

• Tilt tests may provoke higher heart rates even in healthy controls

• CPP Score of 30+ will reliably identify those with POTS

• Cheaper, faster tests may improve diagnosis and access—especially in underserved areas